Introduction to Medical Ethics Medical Ethics in the Global Village

Transcription

1 Introduction to Medical Ethics Medical Ethics in the Global Village Ray Noble Centre for Reproductive Ethics and Rights UCL Institute of Women s Health London, UK

2 Introduction to Medical Ethics Medical Ethics in the Global Village Ray Noble Centre for Reproductive Ethics and Rights UCL Institute for Women s Health London A course in Medical Ethics at ASRAM, Andhra Pradesh, India December 2007 Ray Noble 2007 All rights to the dissemination and distribution of the material in this booklet are reserved. Supported by British Council UKIER Initiative 2

3 Contents Aims and Objectives 4 Introduction to Medical Ethics 5 Practical Ethics 7 Human Rights and medical practice 13 Informed Consent 15 Keeping patients alive, well-being and futility 17 Case scenario 1: Autonomy and informed consent 18 Case scenario 2: Autonomy and Confidentiality 19 Case scenario 3 informing patients of bad news from a diagnosis 20 Case scenario 4 extremely premature babies, quality of life, sanctity of life 21 Case Scenario 5a refusal of treatment in pregnancy 22 Case Scenario 5b blood transfusion in neonatal intensive care 23 Case Scenario 6 Caesarean section patient choice 24 Scenario 7 fertility treatment and confidentiality 25 Scenario 8 - HIV in Pregnancy 26 Public health a consideration of utilitarian ethics 27 Clinical Research Ethics 29 Informed consent from minors - Gillick-competence 30 Hereditary disease and confidentiality 31 Conclusion 33 Answers to questions 34 3

4 Aims and Objectives The aim of this course is to provide, through a series of workshops, an understanding of medical ethics and how it is applied in clinical practice. At the end of the course the student should be able to: 1) describe and discuss the principal strands of ethical thought 2) systematically apply them to ethical dilemmas in clinical practice and how they might best be dealt with The student should gain an understanding of and be able to demonstrate in practice 1) Utilitarianism 2) Deontology 3) The Principles approach to medical ethics and how they are applied 4) Autonomy 5) Informed consent 6) Confidentiality 7) Human Rights as applied to medicine The objective of each workshop is for students working in small groups to apply systematically key ethical principles to specific case scenarios to provide a deeper understanding of the complexity of the ethical dilemmas involved and to give practice in finding solutions to them. The overall aim is to increase awareness of the complexity of ethical issues by addressing key examples in clinical practice so that students learn to incorporate an ethical approach in medical practice. PRINCIPLES DUTIES UTILITY 4

5 Introduction to Medical Ethics What is Ethics? What does it do and how does it work? Ethics is an understanding of the nature of conflicts arising from moral imperatives 1 and how best we may deal with them. Specifically it deals with conflicts in potential outcome (consequences of actions) or with duties and obligations. Ethics does NOT decide what is morally right or wrong; rather it considers how we should act best in the light of our duties and obligations as moral agents. Clinicians have specific duties of care to their patients and to society. It is generally held that clinicians should always act in the best interest of their patients; but sometimes there is a conflict between obligations to a patient and those perceived to be owed to the community or to other patients. It may not always be the case that what the clinician believes is in the best interest of the patient is what the patient wishes or will consent to. Central to modern medical ethics is a respect for patient autonomy 2 and the fundamental principle of informed consent. Medical Ethics is a practical subject as well as a branch of moral philosophy. Ethics is an integral part of good medical practice. It is an essential branch of medicine. Ethics deals with the choices we make and our actions in relation to those choices. It deals with choices made by both clinicians and patients and the duties and obligations of clinicians to their patients. Medical ethics also deals with the choices made by society, the distribution of resources and access to health care and the dilemmas arising from them. Ethics deals with choices. Where there are no choices there is no need for ethics. There are almost always choices to consider and there is almost always a need for ethics. Any choice we make involves ethics, although sometimes we may not realise or consider it. How we live involves choices affecting ourselves and others with both the potential for benefit and for harm (consequences) 3. How we feed ourselves, clothe ourselves, keep ourselves warm, travel to work etc. All these choices have consequences for others. Ethics is also about duties and obligations: to whom we have duties, how extensive they are, how best they may be discharged and how we deal with conflicting duties and obligations 4. Patients have duties and obligations too, which is why we should respect them as moral agents. Parents have duties of care to their children; and sometimes a clinician s duty to a child patient may conflict with those of the parents, and this needs an ethical approach to resolve. Ethical practice involves a systematic approach to decision making and actions, considering the interests of all affected by the decision. Remember: In those situations where you consider you have a duty to people other than your patient, a key issue is how best you discharge these duties in the best interest of both parties. A duty of care is paramount in the relationship between clinician and patient. For example, if a clinician must breech confidentiality of a 1 A moral imperative is one determined by duty. A categorical imperative is one which is not dependent on outcome or restricted by reservations; it is simply determined by duty. 2 Patients are also moral agents with the capacity to decide what is in their best interests if they are appropriately informed. 3 Utilitarian ethics considers justification of decisions in relation to outcome benefits and harms. 4 Deontological ethics considers justification of decisions in relation to duties and obligations. Deontology simply means the study of duty. 5

6 patient, they should consider not only whether they should do so 5, but also how they should do so in the best interest of their patient. 5 There must be very specific circumstances for this to apply. Confidentiality is a key factor in the trust between clinician and patient. 6

7 Practical Ethics In practical ethics we apply a systematic approach. In general we apply four major ethical considerations. First, we must define the nature of the problem. What is the major ethical dilemma? We need a clear understanding of the nature of the dilemma or dilemmas. Consider this example: A baby born prematurely at 24 weeks gestation is put in intensive care. However she is not thriving and scans suggest she has profound brain damage. She cannot breathe unassisted and the care team believe she is suffering and it is not in her interest to keep her alive. The parents do not agree. What should the clinician do? We can usually dissect problems by considering 1) Consequences: what are the consequences of any given course of action? Consider both benefits and harms 2) Duties and Obligations: what are the duties of the clinician? Does the dilemma arise from a conflict of duties? To whom does the clinician owe these duties? If so how best can this dilemma be resolved? 3) Consider the categorical imperatives. For example, is it a case of respect for autonomy or informed consent? 4) Application of principles. How might the four key principles of ethical clinical practice (see below) be applied? Ethics is NOT a set of rules, nor is it a formula: following rules blindly or rigidly is likely to lead to unethical practice because it fails to take account of circumstances or specific exceptions and fails to recognise new dimensions. Each case should be treated on its merits and specific circumstances (for example not all premature babies will have the same outcome). A one rule fits all approach might be unethical as it fails to consider the specific interests of those involved. Ethics DOES seek to set up guidelines to act as signposts to good ethical practice. Always consider any guidelines issued by medical professional bodies; but be prepared for exceptions. Also, guidelines may change in the light of experience and new evidence. Keep yourself informed of any changes in guidelines. Ethics is a complex tapestry, a picture with many colours and strands. There are two primary strands of thought: 1. Utilitarian considers the balance of benefits and harms were outcome may justify the action (ends justify means) 2. Deontological considers duties and obligations and how best they may be met. Outcome may not be sufficient to justify action (ends alone may not justify means). 7

8 The utilitarian approach 6 is attractive because it appears to provide an empirical solution to ethical dilemmas. If we can assess potential benefits and harms they can be weighed, and a balanced judgment made on the proportionate good achieved by a given action or choice. The greater the amounts of benefit for a given amount of potential or actual harm then the more likely it is that the action can be justified. Put another way, the greater the amount of potential harm for a given benefit the less likely it is that the action can be justified. The problem then is to determine 1) the necessary ratio of benefit to harm and 2) how these are measured and weighed and 3) who should make the choice. A specific problem occurs when a group for whom there is a risk of harm is not the group likely to receive any benefit, as is often the case in clinical research trials. An example of the utilitarian approach is the consideration applied to resuscitation and keeping very premature babies in intensive care: for any given case a pragmatic judgment may be made on the likely benefits and harms. General policy on these babies is determined by the proportions of such babies demonstrated to have profound morbidity 7 - i.e. an evidence-based assessment. In practice however the ethical problems are much more complex, involving issues about who makes the decision, informed consent, the right to life and other such considerations factors which are not subject to empirical solutions. In contrast, duties and obligations are rarely determined by empirical data they are difficult to quantify or measure and they are extremely difficult to partition it would, for example, be very difficult to understand a concept of half a duty. Nevertheless, medical ethics in practice is in large part a consideration of duties and conflicts of duty. The ethical consideration here is focused on who has the duty; to whom it is owed, how extensive it is and how best it can be discharged. The onus of a duty and how it is discharged depends on an ability to discharge it. Whilst the onus of duty exists independent of outcome, it might be possible to resolve a conflict of duty by considering implications of any given decision in the discharge of those duties. Consider a person who has been asked to look after a dog whilst also caring for children playing on playground swings and roundabouts. How best should this person discharge their duty if the dog should run off? Consider a family practitioner who is treating a patient for a sexually transmitted disease and this patient s partner is also one of the GP s patients. The distinction between the utilitarian (or consequentialist 8 ) and the deontology approaches is made clearer by considering the following: When considering the choice between two alternative actions, A and B, the consequentialist approach considers which of the two choices is likely to produce the greatest net benefit. Consider, however, what should happen if B is likely to produce the most benefit but A has been promised. There are several ways to consider this problem. A strictly consequentialist view might consider the result of breaking the promise in the net evaluation of benefits and harms, adhering to the view that the ends might still justify the means (including breaking the promise) if the net benefit is sufficient to outweigh the cost of breaking the promise (such costs may involve considerations such as loss of trust and unhappiness at the decision). In the consequentialist approach, the making or breaking of promises 6 Quinton, A. Utilitarian Ethics. (2 nd Edition 1989) Duckworth. London, UK. 7 Some countries have adopted a cut off at a given gestational age. In Holland for example the cut off is at 26 weeks; babies below this gestational age are not resuscitated. In the UK a pragmatic decision is made by clinicians on a case by case basis. 8 Not all consequentialist systems are strictly utilitarian; what they have in common is that actions may be justified by outcome. What are considered as good outcomes may differ between systems. 8

9 is simply viewed as part of the actions and outcomes; they hold no inherent value 9. The deontological approach considers the promise as a duty, the breech of which requires specific justification involving a conflict of duties (say the duty to keep the promise against the duty to do what is in the best interest of the patient, or community). This emphasis on outcome on the one hand and duty on the other may lead to different resolutions. The Principles approach. Four fundamental principles are often applied in modern medical ethics 10 : 1. Respect for individual autonomy individuals are regarded as moral agents with duties and obligations and the capacity to understand and make ethical decisions. 2. Principle of beneficence seek to do good 3. Principle of non-maleficence avoid doing harm 4. Principle of Justice people should be treated fairly. However, applying any one of these principles may sometimes conflict with one or more of the others. For example, applying principles 2 and 3 in relation to a mentally ill patient may conflict with 1 and possibly 2. Can you think of other specific examples? Consider these principles in relation to the case of the premature baby presented above. How should the clinician resolve principles 2 and 3? Where do the parents stand in relation to principle 1? Paternalism doctor knows best the exception not the rule Modern medicine seeks to avoid a paternalistic (doctor knows best) approach to their patients. Instead it considers the doctor and patient mutually engaging in the decision making with the final decision on treatment options being that of the patient. Respect for autonomy, informed consent and confidentiality are now key markers for ethical practice and there must be exceptional circumstances or reasons for breeching them. Nevertheless, there may be circumstances where the paternalistic approach is still a major factor. Consider again the case of the profoundly sick premature baby in intensive care presented above. A key approach here for ethical practice is to consider how best the clinician should act in the interest of this baby whilst still respecting the involvement of the parents in the decision. Categorical 11 Imperative 12 It is useful to consider two kinds of motivation for ethical action. First there are those actions that are justified or motivated by outcome. We can say that these are contingent or dependent on the objective (what they seek to achieve, for example a greater good). The second type of action is special in 9 From a utilitarian perspective, promises would be considered to have value if in general they increase benefit to the greatest number; thus promises have extrinsic value. Keeping promises has value in building trust; the confidence that in general promises will be kept; else promises would have no value at all. 10 Beauchamp, T.L and Childress, J.F. Principles of biomedical ethics (5 th Edition, 2001). 11 Categorical means: leaving no room for doubt, question, or contradiction 12 Imperative: absolutely necessary or unavoidable 9

10 that they are not justified or motivated by outcome or objective. Such actions are non-contingent, and are both ethically means and ends in themselves (they are the greater good). For this reason they are also said to be categorical. When we consider categorical imperatives in ethics we are usually asking if there can be any exceptions and what criteria should be applied to justify these exceptions. 13 Examples of categorical imperatives in modern medical ethics are respect for autonomy, informed consent and confidentiality. Much of modern medical ethics is concerned with dilemmas arising from these imperatives. Because they are categorical in nature, they set the ethical threshold very high indeed. Consider in what circumstances a clinician could or should act without the express consent of the patient or the consent of someone acting on behalf of the patient (a relative for example); how the clinician should proceed in such circumstances; in what circumstances could or should a clinician inform others about their patients and how should they act in the best interests of their patient if such a breech in confidentiality is necessary. It has generally been held that respect for the sanctity of life is a categorical imperative of medical ethics. Does this mean a clinician s duty is always to sustain life? Or are there some circumstances when a respect for human dignity (another categorical imperative) requires the clinician to stop seeking to sustain life and move to palliative care 14 to avoid the suffering of their patient? Practical ethics is concerned with the guidelines for these choices and how they are best applied. A key aspect to note here is that ethics is necessary because our categorical imperatives may often conflict (a clash of fundamental principles). Ethics seeks to understand the nature of this problem and, with practical ethics, how best we should proceed. Which of the following do you consider to be the best description (hint: only one should be picked)? 1) Ethics decides what is right or wrong 2) Ethics decides what is moral 3) Ethics considers the nature of, and how best to deal with conflicts in moral imperatives Which of the following is true (only one is true)? 1) Deontology is the consideration of duties and obligations 2) Deontology considers the balance of benefits and harms 3) Deontology considers that ends may justify means Which of the following is true (more than one may be true)? 1. A Utilitarian approach in ethics considers the consequences of actions or choices 13 This appears contradictory because a categorical imperative by definition should have no exceptions. However, I find this a useful approach because it means that the ethical threshold for any breech of these imperatives must be set extremely high and the justification must be very special indeed. We might also say that such a justification must involve another, conflicting moral imperative. 14 alleviating pain and symptoms without eliminating the cause 10

11 2. A Utilitarian approach in ethics considers that ends may justify means 3. A Utilitarian approach in ethics considers whether clinicians have discharged their duties in the best interests of their patients. Answers are discussed at the end of this booklet. GOOD BENEFITS - HARMS A B ACTION CONSEQUENCES Two approaches to ethical analysis are shown in the diagram: in system B the ethics of an action are determined by the balance of consequences benefits and harms (consequentialist system); in system A the ethics is determined by reference to a measure which is independent of the outcome (an example of this kind of system is the deontological approach considering duties and obligations). In system B there is no concept of an inherent Good Good is simply the better outcome in terms of the greatest increase in happiness or well-being. In system A the concept of Good has an inherent moral value it is good for its own sake. In this system, fulfilling a duty would be considered inherently good a good in itself. The approach of this course and book emphasises that the two types of systems are not totally separate. We may, for example, consider it a duty in general to act in a way which tends to increase well-being. Nonetheless, they are fundamentally different in concept and application. Whether such a duty is discharged sufficiently may be judged by the potential or predicted outcome. However, the fundamental difference remains: the action is performed to fulfil the duty, and this may not necessarily be fulfilled by producing the greatest possible increase in benefit. The duty may require a different balance from that determined by utilitarian criteria alone (consider again the example of the choice between alternatives A and B, where A produces the greatest overall net benefit but B has been promised). The promise could just as readily be confidentiality, informed consent or respect for patient autonomy. It is the nature of categorical imperatives that they cannot easily be 11

12 bargained away. They increase the ethical threshold to a very high level. They require exceptional circumstances before they can be breeched ethically, and in such circumstances we are usually dealing with conflicting imperatives. 12

13 Human Rights and medical practice We hold these truths to be self evident, that all men are created equal. American declaration of independence, This statement of rights has sounded through to the modern day United Nations Universal Charter of Human Rights adopted by the General Assembly in 1948: All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood. 15 Before reading on consider which of these you consider to be the best ethical statement. Consider your reasons for doing so. All humans should be treated equally All humans should be treated fairly All humans should be given an equal consideration of their interests Treating people equally in all circumstances would lead to unfairness because it would fail to take account of differing physical and mental abilities or of the social and economic circumstances of the individual. Treating people equally without regard for their interests, their abilities or their circumstances is likely to be unfair. Clearly from a moral sense (moral equality) we do not mean the same, or equal in terms of endowment. It is in the nature of the concept of moral equality that it is without measure. It is simply sufficient to be human to command the respect in dignity and rights. If we had a measure of equality, then some humans may not measure up. I cannot run a hundred metres in 10 seconds, nor am I an accomplished concert pianist. From a moral perspective, however, I do expect to be given an equal consideration of my interests and needs when I consult a medical practitioner. I certainly would not wish that they consider my life to be of less value because I do not have these abilities. Central to the concept of human rights is that they apply simply because someone is human and for no other reason. Human rights are not a passive process. They are an active process requiring positive action. For example in ethical medical practice the clinician should not simply obtain consent for procedures but make every effort to be certain that the patient understands the consent i.e. that it is informed consent. Sometimes this may not be possible for example where a patient is mentally incapacitated such that it would be impossible for them to fully comprehend the relevant information. However, in such circumstances their should be every effort to obtain consent from someone who might be their guardian or who has a duty of care for them as, for example, a close relative; nor should language difficulties be a barrier to obtaining fully informed consent. 15 Article 1. UN Universal Declaration of Human Rights (1948) 13

14 There has been much effort in recent decades to build the notion of human rights into medicine. For example, an International Bioethics Committee was established in 1993 by UNESCO to consider the impact of developments in biomedicine on human rights. Human Rights provide a universal framework for ethical medical practice. It is debatable whether this framework provides clear solutions to ethical dilemmas. It can be said to present a frame of moral imperatives in the form of rights. As with all such imperatives they are as likely to throw up or expose moral dilemmas as they are to solve them. Perhaps the major impact is in relation to discrimination and justice, access to health care and empowerment. Consider the following case scenario in relation to human rights: A 16 year old girl is accompanied to a clinic by her parents. The girl has a low IQ (below 80). She is pregnant and is having the pregnancy terminated. Her parents have requested that she also be sterilised by tubal ligation 16 which they feel would be in her best interests as she is promiscuous and is not able to understand contraceptive methods. Should the clinician agree to this request? How should the clinician best deal with the request? Human Rights - a Trump Card? Human rights are often presented as though they are an ethical trump card. However, rather than resolving issues, the application of human rights can just as readily create or reveal ethical problems. Consider for example the concepts of a right to life and the right to be treated with dignity. An ethical approach to clinical practice must often reconcile these two fundamentals. Consider for example the decision to move from treatment to combat disease and preservation of life to a palliative regime designed to minimise pain and suffering whilst allowing the disease to take its course. Such treatment may also involve drugs that whilst minimising pain also hasten death. This move to palliative care and ceasing to preserve a life is crucially different to active euthanasia the aim of which is to end a life considered not worth living. Whilst the palliative treatment may hasten death, this is a consequence of the treatment given to relieve pain and suffering, rather than the specific objective of ending life. Arguably, it is not the result of a judgment that any given life is not worth preserving. The difference ethically (and legally) is one of intention. This is much more difficult when the suffering is psychological or where an existence is so restrictive or involves handicap which whilst not necessarily producing physical pain nevertheless involves substantial loss of dignity. Consider for example a patient with advanced Alzheimer s disease or severe motor neurone disease. From a human rights perspective we are dealing with the right to selfdetermination. If such patients have expressed a wish not to have their lives preserved in such cases, what then is the duty of the clinician? These concepts of human rights are allied to the categorical imperatives considered elsewhere in this booklet. The right to self-determination would of necessity incorporate not only informed consent but also informed refusal of treatment. In ethical practice there must be consideration not solely of whether a clinician respects a patient s wishes; of equal importance is how the clinician does so. 16 Tubal Ligation is considered to be permanent in most circumstances. Reversal is difficult and expensive and is often than unsuccessful. 14

15 Informed Consent Informed consent is a key factor in modern ethical medical practice and great emphasis is placed upon it. The main issue is not simply that consent to a procedure is obtained, but more importantly, how it is obtained; not simply that the patients have been told of what happens in the procedure and what the key risks may be, but how they are informed. A patient should not be exposed to risk of harm unless he has agreed to that risk, which he/she cannot do without being properly informed. This is particularly important where there are choices of treatment, each carrying different types and levels of risk and potential outcomes. The circumstance of each patient will be different and they may wish to make different choices about their health and lives. A terminally ill patient, for example, may prefer a therapy which gives him a reasonable quality of life for a few months to be with his family, than a drug regime that may prolong his life for longer but may involve a greater burden of sickness. Clearly this is a personal decision, not solely a clinical one, and only the patient is in a position to decide which option is best for him/her. But the patient cannot do so unless they are properly informed. There are essentially two views of consent: 1. The first is a clinician-centred view, which is a legalistic approach to consent and considers what the clinician should tell a patient about the nature of a procedure and the risks. It is the minimum required to protect the clinician from a charge of common assault. 2. The second is a patient-centred view, which considers what is necessary to enable the patient to make an informed choice. This is what is referred to in ethics as informed consent. It is not always clear what information is necessary for informed consent. Informed consent is essentially an enabling process. A judgment has to be made about what information is relevant and/or significant in enabling a patient to make a reasonable choice that is appropriate for his/her circumstances. Informed consent is patientspecific. It does not mean that the patient should be informed of every conceivable risk no matter how small. Informed consent requires that everything is done to ensure that the patient understands 1. The nature of the procedure what is to be done and in simple terms how it is to be done. 2. The risks involved (but as above, this is not simply a list of all possible risks). They are the most likely risks and any that the patient themselves might be concerned about in making a decision. If a patient asks about a risk that the clinician has not mentioned, then the clinician should inform the patient about that risk. 3. The consequences what are the likely outcomes of the procedure and alternatives 4. The alternatives this includes information about what the likely outcome would be if the patient chooses not to have the procedure and any other alternative the patient themselves may ask about where relevant. Informed consent is a matter of judgement. The key aspect is that it should be enabling for the patient. Ask not what the clinician needs to tell the patient, but what the patient needs to know in order to make a reasonable decision in the light of their needs and interests. A standard way to approach this is to ask what a reasonable person would expect to be told in order to make an informed choice. It is perfectly legitimate for a clinician to withhold information which they may believe to be unnecessarily distressing (a therapeutic decision), but if such information is necessary for the patient to make a reasoned 15

16 decision then it should not be withheld. In such circumstances the clinician should consider how best such information is given and in what circumstances for example, does it require further support or counselling; should the patient have someone with them to support them etc. Patients respond to bad information in a variety of different ways. 16

17 Consider the following case scenario: Keeping patients alive, well-being and futility A 12 year old child has undergone several treatment regimes for cancer over a period of years none of which have been successful. New treatments might offer some benefit but are considered unlikely to lead to a complete cure. Research trials indicate that the benefit can be between a few months to a year of life. After much discussion the parents withhold their consent when the new treatment is suggested by the clinical specialists at the hospital. The parents are concerned that the potential side effects outweigh the possible extension of the child s life. They believe their child has already suffered enough over the years of treatment. Consider what the clinicians should do and what factors should be taken into account. Now consider the following similar case: A 12 year old child has undergone several treatment regimes for cancer over a period of years none of which have been successful. The parents have heard of a new treatment which clinical trials suggest might prolong life of some cancer patients by between a few months and a year. As a result they have requested that this treatment be given to their child. However, the specialist clinicians at the hospital do not believe there would be any significant benefit for the child and that the side-effects of the treatment can often be debilitating. Consider what the clinicians should do and what factors should be taken into account. In what ways do the two scenarios differ? Do these differences lead to a different ethical approach? Identify and consider the major ethical dilemmas apparent in these cases. Do they present more than one dilemma? Many cases will present with more than one major ethical dilemma. 17

18 Case scenario 1: Autonomy and informed consent. Down s screening test: A pregnant woman decides to have a triple marker test for Down s screening. After she has given the blood she decides she does not want to know the result as she wants to have the baby. The test result shows a high risk of Down s syndrome. The clinician feels there will be a high social and economic burden on the family and would like to convey the test result to the patient to inform her decision making. What should the obstetrician do? Apply the four major ethical considerations systematically. What are the major ethical dilemmas? 1. Consequences: what are the consequences of any given course of action? Consider both benefits and harms 2. Duties and Obligations: what are the duties of the clinician? Is this a case of conflict of duties? To whom does the clinician owe these duties? If so how best can this dilemma be resolved? 3. Consider the categorical imperatives. Is this a case of respect for autonomy and informed consent? If so are there sufficient grounds to ignore her wishes? 4. Application of principles. How might the four key ethical principles of ethical clinical practice be applied? What other considerations might apply? What are your conclusions about the best course of action? Give your reasons. What might be the reasons for the woman s decision? Do you think a clinician is always best placed to understand and judge these reasons? Remember in ethics we cannot always provide a satisfactory resolution to all perceived problems. Ethically there is a great deal that the clinician should consider in discharging his/her duty of care. If you decide that the clinician should respect the woman s wishes and not reveal the test result, is there anything else the clinician should do in the discharge of his/her duty of care? Remember that the clinician should ideally be a member of a care team. 18

19 Case scenario 2: Autonomy and Confidentiality You are a doctor working in a busy practice in London, UK. One of your patients is a fifteen year old girl who has come to see you to ask advice about contraception and sexually transmitted diseases. She explains that she has a regular boyfriend with whom she is now having sexual intercourse. At age fifteen in the UK she is considered a minor. Apply the four major ethical considerations systematically. What are the major ethical dilemmas? 1. Consequences: what are the consequences of any given course of action? Consider both benefits and harms. 2. Duties and Obligations: what are the duties of the clinician? Is this a case of conflict of duties? To whom does the clinician owe these duties? If so how best can this dilemma be resolved? 3. Consider the categorical imperatives. Is this a case of respect for autonomy and informed consent? If so are there sufficient grounds to ignore her wishes? 4. Application of principles. How might the four key ethical principles of ethical clinical practice be applied? What other considerations might apply? What are your conclusions about the best course of action? Give your reasons. Do you think this is a case where one rule fits all? Or do you think each of such cases should be treated according to circumstances? For example: would you take the girl s level of comprehension and/or maturity into account? Remember in ethics we cannot always provide a satisfactory resolution to all perceived problems. Ethically there is a great deal that the clinician should consider in discharging his/her duty of care. If you decide that the clinician should respect the girl s autonomy and not inform her parents, is there anything else the clinician should do in the discharge of his/her duty of care? Ethics considers also how best to make decisions and act upon them in the interest of patients. If you decide to inform her parents consider how you should act best to discharge your duty to this young girl. When you have finished considering this scenario read through the section on Informed consent from minors on page x. 19

20 Case scenario 3 informing patients of bad news from a diagnosis A 16 year old girl is referred with primary amenorrhea. Primary amenorrhea is usually caused by genetic or congenital disorders and is often associated with developmental problems during puberty. In this case no uterus can be found on a scan. Should the doctors inform the parents of the diagnosis before the patient is informed, or should they inform the patient directly? How best should they proceed? Apply the four major ethical considerations systematically. What are the major ethical dilemmas? 1. Consequences: what are the consequences of any given course of action? Consider both benefits and harms. 2. Duties and Obligations: what are the duties of the clinician? Is this a case of conflict of duties? To whom does the clinician owe these duties? If so how best can this dilemma be resolved? 3. Consider the categorical imperatives. Is this a case of respect for autonomy and informed consent? 4. Application of principles. How might the four key ethical principles of ethical clinical practice be applied? What other considerations might apply? What are your conclusions about the best course of action? Give your reasons. Do you think this is a case where one rule fits all? Or do you think each of such cases should be treated according to circumstances? For example: would you take the girl s level of comprehension and/or maturity into account? Would you take her emotional state into account? Remember in ethics we cannot always provide a satisfactory resolution to all perceived problems. Ethically there is a great deal that the clinician should consider in discharging his/her duty of care. If you decide that the clinician should respect the girl s autonomy and not inform her parents first, is there anything else the clinician should do in the discharge of his/her duty of care? Consider how you might act if the parents are not available and the girl is asking for information. Ethics considers also how best to make decisions and act upon them in the interest of patients. If you decide to inform her parents first consider how you should act best to discharge your duty to this young girl. 20

21 Case scenario 4 extremely premature babies, quality of life, sanctity of life. A baby born prematurely at 23 weeks gestation is being kept in intensive care. However she is not thriving and scans suggest she has profound brain damage. She cannot breathe unassisted and the parents believe she is suffering and also that the quality of life she can expect will be very poor and further treatment is harmful. The parents believe that her survival should be placed in the hands of God and ask that the ventilator should be switched off. What should the clinicians do? Apply the four major ethical considerations systematically. What are the major ethical dilemmas? 1. Consequences: what are the consequences of any given course of action? Consider both benefits and harms. 2. Duties and Obligations: what are the duties of the clinician? Is this a case of conflict of duties? To whom does the clinician owe these duties? If so how best can this dilemma be resolved? 3. Consider the categorical imperatives. Is this a case of respect for autonomy and informed consent? If so are there sufficient grounds to ignore her wishes? 4. Application of principles. How might the four key ethical principles of ethical clinical practice be applied? If necessary remind yourself of these principles. What other considerations might apply? What are your conclusions about the best course of action? Give your reasons. Do you think this is a case where one rule fits all 17? Or do you think each of such cases should be treated according to circumstances? If so who should make the final decision, particularly where parents and clinicians are in disagreement about the benefits of keeping the baby alive? 17 In many countries such as in the UK the value of keeping very premature babies on life support is a balanced judgement made on a case-by-case basis. In some countries such as Holland this has been determined with a general rule that no baby born under 25 weeks gestation will be resuscitated and kept on intensive care. 21

22 Case Scenario 5a refusal of treatment in pregnancy. You are a clinician working in a fetal medicine unit in a major city in the USA. The fetus of one of your patients is likely to die unless a blood transfusion is given to replace fetal red blood cells that are being destroyed by the Rh-sensitized mother's immune system. This treatment is meant to keep the fetus healthy until he or she is mature enough to be delivered, but the woman refuses to give her consent to this procedure for religious reasons (She is a Jehovah s Witness for whom blood transfusions are forbidden). What should you do? Apply the four major ethical considerations systematically. What are the major ethical dilemmas? 1. Consequences: what are the consequences of any given course of action? Consider both benefits and harms. 2. Duties and Obligations: what are the duties of the clinician? Is this a case of conflict of duties? To whom does the clinician owe these duties? If so how best can this dilemma be resolved? 3. Consider the categorical imperatives. Is this a case of respect for autonomy and informed consent? If so are there sufficient grounds to ignore her wishes? 4. Application of principles. How might the four key ethical principles of ethical clinical practice be applied? What other considerations might apply? What are your conclusions about the best course of action? Give your reasons. 22

23 Case Scenario 5b blood transfusion in neonatal intensive care. A very sick premature baby in intensive care must have blood samples taken regularly to check ph, blood gases etc. The blood samples taken over time must be replaced or the baby will become anaemic and is likely to die. The parents are Jehovah s Witnesses and refuse to give consent to this procedure because it involves blood transfusion. What should the clinician do? Apply the four major ethical considerations systematically. What are the major ethical dilemmas? 1. Consequences: what are the consequences of any given course of action? Consider both benefits and harms. 2. Duties and Obligations: what are the duties of the clinician? Is this a case of conflict of duties? To whom does the clinician owe these duties? If so how best can this dilemma be resolved? 3. Consider the categorical imperatives. Is this a case of respect for autonomy and informed consent? If so are there sufficient grounds to ignore her wishes? 4. Application of principles. How might the four key ethical principles of ethical clinical practice be applied? What other considerations might apply? What are your conclusions about the best course of action? Give your reasons. What are the key factors that are different in this case compared to Scenario 5a? 23

24 Case Scenario 6 Caesarean section patient choice A pregnant woman with a previous section has been advised to go for a normal delivery for her 2 nd delivery. While in labour, she wants to have a section because she is worried about a rupture of the uterine scar. The clinicians are confident that the labour would progress without a complication. Should the obstetrician do a section to abide by the patients wish? Apply the four major ethical considerations systematically. What are the major ethical dilemmas? 1. Consequences: what are the consequences of any given course of action? Consider both benefits and harms. 2. Duties and Obligations: what are the duties of the clinician? Is this a case of conflict of duties? To whom does the clinician owe these duties? If so how best can this dilemma be resolved? 3. Consider the categorical imperatives. Is this a case of respect for autonomy and informed consent? If so are there sufficient grounds to ignore her wishes? 4. Application of principles. How might the four key ethical principles of ethical clinical practice be applied? What other considerations might apply? Is this a case where a paternalistic approach is justified? Notwithstanding the confidence of the obstetrician, are her anxieties reasonable in the light of risk of rupture? What are your conclusions about the best course of action? Give your reasons. One way to view this case is to consider the patient wishes in relation to consent to treatment. In other cases clinicians might be suggesting a section and the pregnant woman refuses to give her consent to this because she wants to have a natural birth. Also consider this in relation to the principle of nonmaleficence (doing no harm). If a clinician believes that a procedure is not in the best interests of the patient, should he/she refuse to carry this out. This dilemma is likely to become more common as many patients are more aware of possible alternative treatments particularly as they can access information readily on the internet. 24

25 Scenario 7 fertility treatment and confidentiality. A couple who have been married for ten years visit a gynaecologist for infertility treatment. The woman has a history of irregular menstrual cycles. The Gynaecologist treats the patient to stimulate the ovaries without success. After a few cycles of treatment the patient decides to see the gynaecologist on her own. She reveals that she had never had cycles (primary amenorrhea). The patient does not wish her clinical condition to be discussed with her husband because she is concerned about the consequences in relation to her marriage. Considering that the doctor was consulted by the couple for fertility treatment, what should the doctor do? Apply the four major ethical considerations systematically. What are the major ethical dilemmas? 1. Consequences: what are the consequences of any given course of action? Consider both benefits and harms. 2. Duties and Obligations: what are the duties of the clinician? Is this a case of conflict of duties? To whom does the clinician owe these duties? If so how best can this dilemma be resolved? 3. Consider the categorical imperatives. Is this a case of respect for autonomy and confidentiality? If so are there sufficient grounds to ignore her wishes? 4. Application of principles. How might the four key ethical principles of ethical clinical practice be applied? What other considerations might apply? What are your conclusions about the best course of action? Give your reasons. 25

26 Antenatal screening for HIV has clear advantages: Scenario 8 - HIV in Pregnancy A negative result can be reassuring, but if the result is positive, in the right circumstances of available facilities and therapy: The infection may be managed effectively The woman can make an informed choice whether or not to continue with the pregnancy The risk of maternal-child transmission can be reduced greatly The woman can make an informed choice about her future fertility The woman s partner can also be tested and advice about contraceptive protection can be given Consider the following options of strategy for HIV antenatal screening: 1. there should be compulsory antenatal screening for HIV 2. antenatal screening should be offered to all women but only carried out with their express consent (an opt in strategy) 3. antenatal screening should be part of routine screening in pregnancy unless the woman specifically requests that HIV screening should not be carried out (an opt out strategy) In the UK, before 1999 an opt in strategy was applied. Antenatal screening for HIV was only carried out with the express informed consent of the pregnant woman. From 1999 this changed to an opt out strategy, and screening was carried out routinely unless the woman specifically requested that it should not be done. As a result HIV status was picked up in many more women and with careful management and antiretroviral therapy maternal-offspring transmission was reduced substantially. Apply the four major ethical considerations systematically. What are the major ethical dilemmas? 1. Consequences: what are the consequences of any given course of action? Consider both benefits and harms. 2. Duties and Obligations: what are the duties of the clinician? Is this a case of conflict of duties? To whom does the clinician owe these duties? If so how best can this dilemma be resolved? 3. Consider the categorical imperatives. Is this a case of respect for autonomy and confidentiality? If so are there sufficient grounds to ignore her wishes? 4. Application of principles. How might the four key ethical principles of ethical clinical practice be applied? What other considerations might apply? What are your considerations about the best course of action in India? Give your reasons. 26

27 Public health a consideration of utilitarian ethics Public health programmes are usually founded on utilitarian grounds of the greatest benefit to the greatest numbers in terms of 1) combating the spread of disease and 2) cost effectiveness in delivery of health care. Such programmes are considered justifiable when these benefits greatly outweigh perceived risks and potential harms. Consider the following current example. The Human Papilloma Virus is a major cause of cervical cancer. HPV is sexually transmitted with an estimated 50% of sexually active males and females being infected at some point in their lives. In the USA, for example, more than 6 million sexually active people are infected with an APV per year. Many countries are or have introduced a vaccination programme to combat this increasing problem. In the UK from September 2008 all schoolgirls aged will be vaccinated unless their parents specifically exclude them from the programme (an opt out strategy). Some religious groups have opposed this because it is seen to be encouraging promiscuity and encouraging unsafe sex. Consider the utilitarian arguments for and against this programme. In the UK programme parents will be able to exclude their children from the programme. Others have argued that it should be mandatory for all children. In relation to public health, the Utilitarian approach adopts a key principle: when considering one or more alternative courses of action the right action would be that which produces the greatest benefit to the greatest number. This formulaic approach is deceptively simple. First identify the benefit and then measure how many people will benefit from a given action. However, a course of action (A) that provides benefit to 51% of people but produces significant harm to 20% is not necessarily better than a course of action (B) which gives benefit to 40% of people but harms only 10%. The extra 11% who may benefit from action A comes with a heavy price; a significantly greater cost of a further 10% who are significantly harmed. Nor can we get a simple ethical answer by an arithmetic formula of subtracting harm from benefit: in A such a calculation produces 31% and in B 30%. The problem is starker if the people being harmed are not also those receiving any benefit: the benefit to the greater number is here then at the cost to others. If we are not careful we could justify the enslavement of the few for the benefit of the many. Principle of an Equal Consideration of Interests. One approach to this problem is to hold that for utilitarian principles to apply there must be an equal consideration of the interests of all in the balance of potential benefit and harm. Consider again the problem of resuscitating very premature babies presented earlier. In the UK this is determined on a case by case basis with a clinical assessment of likely outcome. As a consequence between 20 and 25% of these babies survive with extreme brain damage and profound mental and physical handicap. In contrast, in Holland the policy is not to resuscitate very premature babies. We could argue that the cost of the policy in Holland is that 75% of babies who would have survived with moderate to no handicap but who are by this policy denied a chance of life. We could equally argue that the cost in the UK for the 75% who survive with little to no handicap is the very profound handicap of those affected. This demonstrates 1) how difficult it can be to apply the approach of utility to answering such ethical issues and 2) that there is rarely a clear empirical answer to ethical problems. Also whilst the actual statistics represent real babies, the extrapolation is that of risk and the potential for harm or benefit. 27