Sybghat Rahim

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ICSM Year 3

Revision Notes by

Sybghat Rahim

Contents

Autonomy, Best Interests and Paternalism

2

Ethical Theory and Constructing an Ethical Argument 4

Children

7

Ethics at the End of Life

10

Mental Incapacity, Disability and Justice

13

Confidentiality

16

Resource Allocation

18

Consent, Capacity and Refusal in Adults

21

Confidentiality and the Law

23

Children and the Law

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The Mental Capacity Act

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How to Pass the Exam

29

2012 MBBS/BSc Examination Scenario

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Sybghat Rahim

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Autonomy, Best Interests and Paternalism by Dr Wing May Kong

Introduction Ms B is a 43 year old social worker who has suffered a haemorrhage within the spinal cord, leaving her permanently paralysed from the neck down. She is dependent on artificial ventilation to stay alive. She told the staff in ITU that she did not want to continue living in this state and requested that the ventilator be switched off, but ITU staff refused. Ms B agreed to a course of antidepressants, but 6 months later she is still requesting that the ventilator be switched off. Having been assessed by two independent psychiatrists, Ms B is mentally competent and not depressed, but staff argued that Ms B could not make a properly informed decision until she had spent some time in a specialist rehabilitation unit. If Ms B is indeed mentally competent, she has an absolute right to refuse to consent to treatment for any reason, rational or irrational, or for no reason at all, even where that decision may lead to her own death. Continuing to ventilate Ms B in the face of her competent refusal is unlawful and the ventilator must be switched off even if this would result in her inevitable death. Ethics is an integral part of all clinical encounters and medical interventions. Sound ethical reasoning is fundamental to the ongoing evolution of medical law, professional values and health policy. Autonomy The right to determine what shall be done to one’s own body is a fundamental right in our society. The concepts inherent in this right are the bedrock upon which the principles of self-determination and individual autonomy are based. Autonomy is about deciding the direction in which one’s life should go, and being free to make one’s own choices in life (friends, career, money, relationships, children…). Autonomy promotes our best interests. We each have different values, priorities and aspirations. Therefore we are usually best placed to know what is in our best interests. But what if we make “bad choices”? If we drop out of medical school, or marry the wrong person. Well, what may appear as an objectively bad choice may actually turn out to be the right choice. And what about bad health related choices like smoking, eating cream cakes and base jumping? There is more to “well-being” than just medical well-being. Best medical interests are not necessarily the same as best interests, so a bad health choice may still be one’s overall best interests. But what if we make really bad choices? For example, demanding that my ventilator be switched off. Can death be in my best interests? It may be said that a person seeking to end their life cannot be making a rational choice and therefore cannot be an expression of autonomy. This justifies the paternalistic view that a person wishing to die does not know his interests, and that we know what is good for him better than he does. Alternatively it may be said that we do have an interest in deciding the manner of our death, and that having an undignified life where we are dependent on a ventilator and on others may be worse than death. Being able to make meaningful choices is a fundamental aspect of being human. Even if we make some very bad decisions, being free to make one’s own choices (and one’s own mistakes) is important to flourishing as a person. Without free will we do not have moral responsibility. Autonomy has instrumental value as it promotes best interests. It also has intrinsic value as it is essential to human flourishing. But respecting autonomy in medical practice does not simply mean handing over decision making to the patient. Autonomous choices require the ability to understand information, to form values, and to make decisions based on values and an understanding of information. Respecting autonomy means enabling patients to make autonomous choices by giving them adequate information, clear explanations, plenty of time to consider options, not unduly pressuring them, and by being non-judgemental.

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Autonomy and Medical Care Respecting autonomy requires us to provide a reasonable range of choices. In terms of medical care, respecting autonomy is likely to:

- Help doctors give better advice - Enable better shared decision making - Improve confidence - Improve trust - Improve adherence

Are there any limits to autonomy? We live in a society that values autonomy highly, and treating others as equals requires us to respect autonomy equally. Limits to autonomy must be reasonable and applied fairly. In the words of J.S. Mill, ‘the only purpose for which power can be rightfully exercised over any member of a civilised community, against his will, is to prevent harm to others. His own good either physical or moral is not sufficient warrant’. Harm to others includes examples like drink driving or passive smoking. But what about excessive burdens on family members? Excessive use of health care resources because of lifestyle choices? Forcing doctors to act against their moral conscience? Do these examples count as harm to others? To simply switch off Ms B’s ventilator would leave Ms B to die of asphyxiation, causing her considerable suffering and distress. To avoid this, her doctors would need to sedate her and gradually turn down the ventilator. By this stage, the ITU staff had known Ms B for over 12 months. Going Against Moral Instincts What if a doctor feels morally compelled to act paternalistically? Moral instincts are important because having a sense of right and wrong is important. It is reasonable to require a doctor to go against his/her own moral instinct? Perhaps sometimes our sense of moral right and wrong is misguided. Better communication may improve mutual understanding so that doctor and patient understand each other’s perspective better. This may also help the doctor accept the patient’s decision. Paternalism and Truth Telling Paternalism is overriding or undermining a patient’s autonomy based on the healthcare professional’s view of the patient’s best interests e.g. withholding bad news. There are a couple of arguments that are sometimes used to justify paternalistic dishonesty. For example, saying that technical information is difficult to put across (patients may not understand or may put undue weight on rare complications of treatment), doctors face uncertainty (life expectancy outcome of a treatment may be unpredictable), or the patient might not be able to handle the information (what you don’t know can’t hurt you). Around 70% of patients do say that they would want to know if they had cancer, and most doctors would want to know too. Is lying worse than withholding the truth? There are two sides to the argument. It could be said that lying is indeed worse because withholding information restricts autonomy less, patients may actively “collude” in the withholding of information, it is impossible to tell patients everything, and it is a moral duty not to lie. On the other hand some might say that withholding the truth is worse because if the intention is the same then it is morally equivalent, it is wrong to assume patients don’t want to know, and it is a moral duty not to withhold information that you know would be important to the patient. The fact is, withholding information is rarely justified. Most patients want to be told their diagnosis, and many patients with a serious illness suspect their diagnosis before they are told. Knowing the diagnosis and prognosis is important for making other important decisions. Patients may not trust their doctor if they feel s/he is not being honest with them. The way in which bad news is broken makes a big difference.

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Ethical Theory and Constructing an Ethical Argument by Dr Wing May Kong

Recognising the ethical dilemma Mr R is a 63 year old man with Korsakoff’s dementia and alcohol related epilepsy. As a consequence, he has an extremely poor short term memory. He lives alone in his own home. He continues to drink and does not take his epilepsy medication. As a result he has had 5 admissions in the past 9 months with seizures. Following various failed attempts to improve compliance with his medication the multidisciplinary team agree that Mr R should be moved to a nursing home. You’ve got to unpick the assumptions and analyse the values:

- What does Mr R want? - What is the ethical value of Mr R’s wishes? - Why is being able to stay in his own home valuable to Mr R? - How important is it for Mr R’s overall well being to prevent further seizures? - Should Mr R’s well being be the determinative factor? - Is it fair that Mr R uses health resources through his drinking behaviour?

Values are core to ethical reasoning. It is important to critically analyse values, and use the analysis to make better decisions and to critically appraise the law and professional guidance. Ethical reasoning is about using these skills to contribute to the ongoing evolution of medical law and professional values. Ethical reasoning needs to be clear, coherent, consistent, cognisant of the facts, and impartial where there is no ethically relevant difference. A coherent statement might be: “Mr R is not competent to make a decision regarding long term placement and it is unreasonable for the NHS to have to treat him for his self inflicted seizures”.

A consistent and impartial statement might be “Health care should not be provided to individuals with self inflicted health problems as their ill health is due to personal lifestyle choices”. So health care would not be provided to those with alcohol or smoking related diseases. But what about sports injuries, depression due to marital breakdown, anaemia secondary to pregnancy? You’ve got to be cognisant of the facts. Of the previous 5 attendances, 2 were for less than 12 hours and 2 were overnight. Mr R has been in hospital for almost 1 month with this most recent admission whilst a nursing home placement is being arranged. Mr R goes to the pub because he likes company and his house is cold. Mr R came to the UK as a teenager with nothing and bought his house in his 30s. His three children grew up there and his wife died there 4 years ago. In terms of clarity, just think if your ethical argument could be followed and understood by an intelligent 13 year old. Ethical theory can provide a framework for approaching and analysing ethical dilemmas. Ethical theory does not provide an algorithm which will give you ‘the answer’, but an understanding of ethical theory can help clarify thinking around an ethical dilemma. Consequentialism and Utilitarianism An action is ethically right if it brings about the best foreseeable consequences. Utilitarianism is a form of consequentialism which states that the right action is that which brings about the maximum overall happiness. A democratic approach means equal weight is given to each individual when calculating overall happiness. All other things being equal, utilitarianism requires us to take the actions which save the most lives or reduce the most suffering. But it may be difficult to predict the consequences. The only ethically relevant feature of an action is its consequences. Thus in certain situations lying, killing, torture may be the ethically right thing to do. Under a consequentialist approach we are as morally responsible for our omissions as we are for our actions if the net

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result is the same. Utilitarianism is not concerned with ensuring a fair distribution of social goods, there are morally valuable factors other than consequences. According to duty based (deontological) theories, certain actions are right or wrong in themselves irrespective of the consequences. For example, a duty to kill, a duty not to torture, a duty to keep promises. Duty based theories are simple as they do not require prediction or calculation of consequences of an action. But how do we decide which actions are right and which are wrong? What do we do if our moral duties conflict? A duty based theory absolves the individual for the consequences of their actions even if the consequences are very bad. Virtue Ethics A virtue is a character trait a human being needs to flourish or live well (Aristotle). The best life of a human being consists in the exercise of the virtues, e.g. honesty, integrity, wisdom, courage, fairness and compassion. Virtues can be nurtured and developed. The right course of action is the course that a virtuous individual would take. Ethical dilemmas occur in real time with real individuals. Attempts to abstract the ‘morally relevant factors’ oversimplifies the dilemma and ignores morally important relationships. The process by which an ethical dilemma is resolved is as morally relevant as the final decision. Thus facilitating discussion of all interested parties, listening and reflecting on differing perspectives, negotiation and reaching consensus are central to ethical decision making. Constructing an Ethical Argument

1) First paragraph: make the proposition Develop arguments justifying the proposition Add evidence (where applicable) to support the argument

2) Second paragraph: counter the 1st

argument Weaknesses of the 1

st proposition

3) Third paragraph: alternative proposition Address the weaknesses you have identified

4) Conclusion Always use linking words to follow on from the previous point, like “whilst it can argued” or “it is also true that…” and “However, to counter this argument”. Alternate for and against, or give all the arguments for, then all the arguments against. Always use empirical evidence. Reflect on your position and your arguments in the light of available empirical evidence. Use the empirical evidence to support your arguments, not to replace them. References can be very helpful - reading and reflecting on the arguments of others is a core part of ICSM ethics teaching. If you quote or paraphrase another person’s argument and reasoning, you must acknowledge this. With regards to reaching a conclusion, you should identify which viewpoint (on the basis of your prior analysis) you consider to have greater validity. Your conclusion needs to be consistent with your preceding analysis. Is Abortion Ethically Permissible? A duty based analysis is that there is a moral duty not to kill an innocent human being deliberately. All human fetuses are innocent human beings, and therefore it is always wrong to kill a human fetus deliberately. Abortion is the deliberate killing of a human fetus, and therefore: abortion is always wrong. But what is it about human life that makes it more valuable than other forms of life and therefore imposes a specific duty not to kill? Killing a zygote is clearly not morally equivalent to killing a 5 year old child. A zygote maybe genetically human but it does not share the other features that make human life especially valuable.

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An alternative proposition is that it is personhood that makes human life especially valuable. Persons are individuals with self-awareness and autonomy. Of course there is a moral duty not to kill an innocent person deliberately, but a human fetus lacks self awareness and autonomy, and therefore a human fetus is not a person. Therefore abortion is morally permissible (although not necessarily desirable). But then neonates, young infants and adults with severe mental disability also lack self-awareness and autonomy. Therefore are these individuals not persons? Therefore do they not have a right to life? Is it morally permissible to use infanticide and kill those with severe mental disability? A third duty based approach is Thomson’s Violinist. Imagine you woke up and found a concert violinist attached to you. He is relying on your kidneys and lungs to stay alive. In 9 months time, his body will have recovered sufficiently for him to be removed from your body. Do you have a moral duty to keep the violinist attached to you? We have a duty not to kill deliberately. It is generally a good thing to save those in need of rescue, and we may have a duty to save others in certain circumstances. But we cannot have a duty to save everyone irrespective of the cost to ourselves. Pregnancy is above the call of duty. A fetus may have the same right to life as an adult, but pregnancy is a significant physical burden and risk to the mother. We do not have a moral duty to put our lives at risk or endure physical burdens to save others. Therefore a woman does not have a moral duty to continue a pregnancy. Conclusion In summary, good medical practice requires ethical decision making. It is essential to recognise when value judgements are being made. Sound ethical reasoning is key to assessing value judgements. An understanding of ethical theory can help bring clarity and consistency to your ethical reasoning.

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Children by Dr Wing May Kong

When it comes to the medical care of children, who decides? Is it the child? The parents? Or the healthcare professional? It is helpful to consider two groups of children when thinking about decision making - older children/teenagers, and infants/babies. For a decision to be autonomous, a child needs to be able to understand information, be able to formulate values in order to weigh up information, and be able to make a decision without feeling under undue influence. Even young children value being able to make decisions. Children need to learn how to make decisions and understand their consequences if they are to flourish as autonomous adults. It should also be considered that sometimes overriding a child’s choice or decision risks promoting hostility and non-compliance. Autonomous Children Teenagers and older children may meet the criteria for autonomous decision making but may make unwise decisions. For example, a 15 year old wanting to continue a pregnancy against her parents’ advice or a 15 year old refusing a heart transplant for end stage heart failure. Problems with Children’s Problems Cognitive ability increases with age, but it can be difficult to be sure that a child fully understands the impact of their decisions. Children mature psychology and the ability to decide independently of parental and social influence increases with age. Values, aspirations, priorities and beliefs change as a child grows, and a child’s views of his or her best interests changes with time. At any one time a child/teenager may have the understanding and value system relevant to the decision being made. But those values are likely to change with time and, the child/teenager may not fully appreciate the impact of their decision on their adult life. So does this provide grounds for overriding what would otherwise be considered autonomous decisions in teenagers or older children? To argue in favour of an autonomous child’s rights to decide, it could be said that adults make bad decisions all the time, and the values, aspirations, priorities and beliefs of adults change over time, and even as adults we often don’t appreciate the implications of our decisions for our future lives. Defining Best Interests John Eekelaar proposed subdividing children’s best interests into basic interests, developmental interests, and autonomy interests.

- Basic interests include the promotion of physical and emotional care and well-being, as well as ensuring health, security, housing, feeding and clothing.

- Developmental interests include promoting the development of a child as a person, education, socialisation, confidence, and emotional maturity.

- Autonomy interests include promoting the development of autonomy, and respecting autonomous choices.

Eekelaar proposed an approach to balancing the basic, developmental and autonomy interests in children as they grow up. All are necessary to ensure current well being and development into an autonomous adult. Respecting autonomous choices will usually be crucial to this development, but you need to balance respect for autonomy with need to protect a child from ‘bad decisions’ to ensure that they reach autonomous adulthood. If the choice will result in death or serious harm then the basic and developmental interests take precedence because they are necessary to reaching adulthood. So, overriding autonomy may be consistent with acting in a child’s overall best interests. As a child matures, increasing weight should be given to their autonomous choices and it is less likely that overriding their decisions will be in their overall best interest.

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Teenage Refusal A 15 year old boy with leukaemia has been a devout Jehovah’s witness since the age of 9. He has accepted an autologous bone marrow transplant but refused blood product support. The court ruled that he should receive a blood transfusion necessary to save his life, and the bone marrow transplant was successful. Aged 19, the boy committed suicide. He couldn’t live with himself for going against his religion. Children who lack Autonomy Babies, infants and younger children lack autonomy. Decisions made on behalf of children should promote their best interests. What constitutes best interests is a question of value, not fact. So parents and health professionals may have different perspectives on what constitutes best interests. Parental Autonomy Baby T is a 14 month old boy with biliary atresia, and unfortunately he will die within 1 to 2 years without a liver transplant. His parents don’t want T to have a transplant. Doctors place T on the transplant list. Parents move abroad and refuse to come back for transplant. In this case, who should have the final say when doctors and parents disagree? Do parents have a right to decide what should be done to their child? Or do parents have a responsibility to do what is best for their child? The best interests argument is that parents usually know their children better than anyone else. Generally, no one will love a child in the same way as a parent. The welfare of the family will usually be highly relevant to the welfare of the child. So parents are generally best placed to decide what is in their child’s best interests. However, parents may be so emotionally involved that they can’t objectively weigh up the benefits and burdens of treatment. The personal views or beliefs of parents may lead them to consider effective treatments as unacceptable. The parental rights argument is that individuals have a right to their own personal values and beliefs. Therefore, we should respect the personal views and values of others. It is desirable for parents to share their values and belief system with their children. Therefore, we should not interfere with the decisions of parents provided they are motivated by the welfare of their children. But individuals do not have a right to impose their own personal values and beliefs on others. Parents have a duty to enable their children to reach autonomous adulthood. Autonomy can be overridden if it harms others. Therefore, parents should not be able to martyr their children to their values and belief system. Baby T had had surgery when a few weeks old. This had been unsuccessful and had resulted in considerable pain and distress for T. His parents did not want T to go through another major operation which would cause pain and distress with no guarantee of success. T’s parents thought that inevitable death was better than the pain and distress of a liver transplant even if this was the only prospect of long term survival. Can the pain and distress caused by a treatment be worse than inevitable death if treatment is withheld? Whether a treatment is ‘too burdensome’ is a question of value, not fact. Adults can value their lives (present and future), and adults can determine the significance to them of the discomfort or pain of treatment. With very young children and babies, parents and doctors will bring their own perspectives in weighing up these values to make decisions.

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Generally, parents and doctors share the same primary concern: the child’s welfare. However, differing values and beliefs lead to differing assessments of welfare, harm and benefit. Good communication and reflection is likely to improve trust and mutual understanding making it easier to reach an agreed way forward. Non-Therapeutic Medical Interventions in Children Can it be in a young child’s best interests to undergo a non-therapeutic medical procedure? For example, tissue/organ donation or medical research? Non-therapeutic medical research inevitably carries some risk, with no direct medical benefit. Should young children be able to participate in non-therapeutic research even if it is not in their best interests? Children should be able to participate in non-therapeutic research because it allows them to be altruistic. But altruism is not the primary motivator for most adults participating in non-therapeutic research. Is altruism morally valuable if the child has no understanding of altruism? Non-therapeutic medical research is necessary for medical progress. Today’s children benefit from previous research involving children. Is there a duty for health service users to participate in medical research? We do not consider adults to have a duty to participate in medical research. Adult participation in research is voluntary, as adults understand purpose and risks of participation. Conclusion In summary, there are potential conflicts between autonomy and best interests. In children it has been suggested that a child’s autonomy interests requires us to ensure that children reach autonomous adulthood. Best interests is a question of value. Mutual respect and good communication is essential if conflict is to be minimised.

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Ethics at the End of Life by Dr Adrian Raby

Following a motorcycle accident, Mr R is a patient is showing no signs of life, and a ventilator is the only thing keeping him alive. Definitions of Death

1) Permanent loss of conscious awareness 2) End of breathing and heart beat 3) Brainstem death 4) Death as a process, i.e. no clear cut off 5) Desoulment

In 1988, the Department of Health stated that “Death entails the irreversible loss of those essential characteristics which are necessary to the existence of a living human person. Thus, it is recommended that the definition of death should be regarded as ‘irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe’. The irreversible cessation of brain stem function (brain stem death) whether induced by intra-cranial events or the result of extra-cranial phenomena, such as hypoxia, will produce this clinical state and therefore brain stem death equates with the death of the individual.” Best Interests When making a decision about a patient’s life there are several questions that need to be asked. What does the patient want? Is there evidence of their past wishes or views? Is there an advance directive? A good clinical assessment is important, as well as taking into account the views of the family and the views of the medical team. If the patient is able to communicate (e.g. using eye movements), there are a few implications of assessing the patient’s decision making capacity. They need to understand information, retain information, weigh/balance information and communicate decisions. The legal view (Airedale Trust v Bland) is that you need to question whether it is in his best interests to be kept alive. There are different cases where for example a treatment may be invasive, hazardous, and may prolong a poor quality of life, in which case the treatment may be judged not to be in the patient’s best interests. Where treatment is futile there is no duty to initiate or continue treatment. Sanctity of Life This is a term used to mean a number of different things. Essentially it can be taken to mean that it is intrinsically wrong to end human life, and this is independent of any other considerations. But does this mean that we must always strive to keep life going? Vitalism is the idea that all possible steps should be taken to extend life where it is possible to do so (e.g. patient in a permanent coma / permanent vegetative state). The religious view is that life is a gift from God, and therefore we don’t have the right to dispose of life, in fact we have a duty to preserve it. Those who disagree with the notion of the “sanctity of life” might argue that life is of instrumental value rather than intrinsic value, and only conscious life need be protected (A ‘life worth living’ [Jonathon Glover]). This is the idea that life is only valuable because of what it allows for the person whose life it is. There may be some lives that are so awful that they are not worth living. This doesn’t mean necessarily that those lives can be ended, but it does mean that we only have a duty to preserve lives that are lives worth living. The legal view is that as fundamental as sanctity of life it, it is not absolute. It does no violence to the principle to hold that it is lawful to cease to give medical treatment, considering that to do so involves invasive manipulation of the patient’s body to which he has not consented and which confers no benefit on him (Airedale Trust v Bland).

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Mr B is a 17 year old who has suffered a pneumothorax and hypoxic brain injury, leading to “catastrophic and irreversible brain damage”. He has entered into a persistent vegetative state (PVS). In a persistent vegetative state, the cerebral cortex loses function and activity, but patients retain brainstem function and are able to breathe unassisted. They have normal sleep-wake cycles and periods of wakeful eye opening. This state is unfortunately irreversible. The patient shows no evidence of awareness, but the swallowing reflex may be preserved, and they may survive for many years. Mr B was fed through a nasogastric tube (ANH: Artificial Nutrition and Hydration), and had frequent infections that were treated with antibiotics. He had a urinary catheter. After 4 months, his parents requested that treatment be discontinued. The hospital trust applied to the High Court for a declaration that it would not be unlawful to withdraw treatment. 3 years later the case went to the House of Lords. Is ANH medical treatment or basic care? Is there a morally relevant distinction between an act and omission when they both result in death? There are some circumstances where omissions are morally different to acts. An example may be failing to send funds to save starving children in Africa vs sending poisoned foods. But there is not always a clear distinction between an act and an omission when it comes to something like turning off a ventilator. There are cases where an omission may have the same consequences and be morally as bad, e.g. omitting to give a diabetic patient insulin while I catch up with friends over coffee. Withdrawal of treatment constitutes an omission rather than an act. The doctors are returning him to a position that he would have been in without treatment. Consider then whether the omission constitutes a breach of duty. Where treatment is futile there is no duty to treat, and the patient is to be regarded as having died of his condition rather than the doctor’s action/inaction. But since we are making a deliberate decision aimed at ending life, where is the moral difference between this and euthanasia? The Doctrine of Double Effect It is always wrong to perform a bad act although good may result, but it is sometimes permissible to perform a good act though harm may result. This statement rests on the difference between what is intended and what is foreseen. If an action has a morally bad consequence we are justified in carrying it out as long as the bad consequence is not intended and the good effect is not brought about by the bad. The good effect must be sufficiently good to warrant the bad effect. An example of this is pain relief:

- The act in itself is not bad, it’s pain relief. However, the effect of it might hasten death. - The bad consequence is not a means to the good consequence, in that pain relief is not brought about

because of the patient’s death. - The bad consequence is foreseen but not intended. We do not intend the patient to die; we only

intend to relieve the pain. - Sufficiently serious reasons for allowing the bad consequence to occur need to be proportional. The

patient’s pain and condition must be severe enough to warrant the action. Utilitarians will say that it is the result that is important, and that we are responsible for our actions whatever the consequences. Who decides on what is in the list of good acts vs bad acts? There may be problems defining what the act is. And how do we decide what is intended vs foreseen? Assisted Suicide At one time attempted suicide was punishable by capital punishment! This was until the Suicide Act 1961. Suicide and attempted suicide are no longer crimes. However, it is an offence to ‘aid, abet, counsel or procure’ suicide, which includes giving encouragement or support. You will be imprisoned for a term not exceeding 14 years. But it is an offence only if the person actually does commit suicide. Euthanasia is the killing of someone who, in the view of his distressing condition, it is thought to be in his interests. There are a few forms of euthanasia including active, passive, voluntary, non-voluntary and involuntary.

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An ethical argument for autonomy is that it is not possible to make an informed autonomous choice to die. Many commentators supporting euthanasia argue in terms of protecting dignity. But a counterargument is that we need to respect the dignity of those actually doing the killing. Dignity is poorly defined, and there may be benefits of palliative care. Other arguments against euthanasia involve the sanctity of life. It is intrinsically wrong to end life. Dworkin said that “value cannot be poured into a life from the outside, it must be generated by the person whose life it is”. Many will say that euthanasia is a slippery slope. The Nazi euthanasia programme for example started with the killing of handicapped children. Judgements were made based on the usefulness of the child’s life to society, not to the individual. This led later to euthanasia of those considered undesirable, and later to all non-Germans. There have also been slippery slope effects in the Netherlands, with 0.8% non-voluntary deaths. Euthanasia has profound effects on society. The perception of the ill and vulnerable changes, some individuals feel pressure, and there is an overall impact of viewing killing as acceptable. There are also of course effects on medical professionals. The BMA has said that improvement in palliative care allows patients to die with dignity, and that physician assisted suicide should not be legalised. Euthanasia should not be made legal in the UK. If euthanasia were legalised there should be a clear demarcation between those doctors who would, and those who wouldn’t be involved in it. Conclusion In summary, the starting point in making good decisions is good clinical information. For patients who lack capacity, decisions based on best interests need to incorporate a wide range of perspectives. If there is uncertainty then treatment should be aimed at prolonging life. Concepts such as the sanctity of life, the acts/omissions distinction, and the DDE are widely referred to but need critical thought.

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Mental Incapacity, Disability and Justice by Dr Wing May Kong

Mr A s a 19 year old British student of Vietnamese origin with cardiomyopathy. Mr Z is a 19 year old British student of English origin with cardiomyopathy. Both will die in 3 months without a heart transplant. Both have a life expectancy of at least 10 years with a heart transplant. Who should get the transplant? Mr A is a 19 year old with Down’s syndrome and cardiomyopathy. Mr Z is a 19 year old British student cardiomyopathy. Both will die in 3 months without a heart transplant. Both have a life expectancy of at least 10 years with a heart transplant. Who should get the transplant? Most people think that human life is of special value compared to other forms of life. What makes human life special? Are some lives more valuable than others? Identifying what morally relevant features give human life special value is central to many healthcare decisions, such as entitlement to health care, continuation of life sustaining treatment, access to scarce resources, protection in utero, and animal research.

IN OUT

46XY, all humans, human zygotes, human blastocysts Kleinfelters (XYY), any non-human intelligent life form

Autonomy: competent adults, teenagers, older kids Adults and children with mental disability, babies

Self-consciousness: most adults, children and apes Babies, children/adults with severe mental disability

Capacity for complex emotions: adults, kids, babies Young babies, severe mental disability

Healthcare and Justice Is healthcare a matter for justice or simply another market commodity? Justice is concerned with the reciprocal relationship between individuals and society. It carries the fundamental notion that all humans are equally valued. A systematic failure to treat individuals fairly is unjust and implies that the State and its citizens consider such individuals of less value than others. Amartya Sen has argued that if we value all human lives equally then justice requires that we ensure that all individuals have an equal capability to flourish/pursue lives of value. Decent health and access to healthcare is necessary to achieve a minimally decent life. Decent health and access to healthcare is fundamental to individual flourishing and therefore is a matter of justice. Is there more to healthcare than capabilities? Not all ill-health limits the capability to flourish. Some human flourishing occurs because of ill-health or disability. Illness causes physical and mental suffering which is remediable with effective healthcare. Our response to human suffering reflects how we value them as individuals. Failure to ensure healthcare for treatable illness implies that some individuals are less valuable than others. Healthcare and Rights Rights are a special form of moral claim which impose obligations on others to ensure such claims are upheld. Human rights are rights that are possessed solely by virtue of being human. These rights apply to all humans whether or not the individuals are aware that the right exists. There are negative and positive rights. Many rights are about what others may not do to us, e.g. kill or injure or steal from us. However, positive rights dictate what others must provide for us, e.g. education and health care. What about the right to housing? The right to welfare? The right to fertility treatment? Or are they simply things that would be nice for a decent society to provide? If healthcare is a human right, this imposes an obligation on others to ensure adequate healthcare is provided to all humans. However, at a global level, who are these others with whom the obligation rests? Without the institutions to deliver these obligations, a right to healthcare is an empty entitlement and arguably no more than political rhetoric. It is debatable whether healthcare is a human right, but many would agree that it is a matter for justice. As such the allocation of healthcare should be equitable.

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Equitable Healthcare What constitutes equitable healthcare?

1) Healthcare allocated according to the need of the individual 2) Unequal treatment is only permissible if there are morally relevant factors 3) Equal respect for individuals

a. Respect for autonomy b. Concern for welfare - best interests

Ms Y is a 46 year old woman with severe learning disability and a mental age of 2. She has lived in residential care since the age of 15. She cannot speak and needs assistance with all aspects of self care. She has 3 sisters. She seems particularly close to her eldest sister whom she is always happy to see. In 2000 Ms Y’s oldest sister developed acute leukaemia. Her prognosis was extremely poor unless a suitable bone marrow donor could be found. Of her 3 sisters, only Ms Y was a suitable match. Should Ms Y be a bone marrow donor for her sister? YES: a consequentialist approach: Being a bone marrow donor is of minimal long term risk to Ms Y. Ms Y’s sister will die without a bone marrow transplant. Therefore bone marrow should be harvested from Ms Y. NO: justice requires that we act in Ms Y’s best interests: Respect for persons means we should respect individual autonomy and if an individual lacks autonomy we should act in their best interests. Ms Y is not capable of giving consent to bone marrow donation. Therefore harvesting bone marrow is only acceptable if it is in Ms Y’s best interests. Best interests: Ms Y has a close relationship to her sister that is very valuable to Ms Y. In this situation the benefit to Ms Y of saving her sister’s life through a bone marrow transplant would mean that Ms Y was not simply being ‘used’ to save her sister’s life. In which case bone marrow should be harvested from Ms Y. Who decides best interests and how do we decide best interests? Best interests are decided by the individual with mental capacity, healthcare professionals and family. They are decided by considering wishes and values of the individual, prognosis, physical and psychological impact of treatment, impact of treatment on quality of life, impact on carers, and also the previously expressed autonomous wishes of the individual. If a person loses autonomy through acquired mental disability (e.g. head injury or dementia), should their previous values, aspirations, likes and dislikes be considered when trying to work out what is in that person’s best interests? Ronald Dworkin has argued that autonomous individuals have an idea of how their lives should unfold and how their lives should end. Respecting autonomy requires us to respect these values. Therefore an individual’s previously stated autonomous wishes should be determinative if autonomy is subsequently lost. Under the Mental Capacity Act, advance decisions drawn up when an individual is mentally competent are legally binding. Mr E. Kenieval is a 42 year old motor cycle enthusiast. He is injured in a major accident and is in a coma for 2 weeks. There are initial concerns that he may not walk again. However, after several operations and many months rehab he makes a full recovery. Following this experience he draws up an Advance Decision with his lawyer stating that he refuses life sustaining treatment should he for any reason become incapacitated such that he is dependent on others for his daily needs with no meaningful prospect of recovery. 14 months later Mr Kenieval collides with a van at a roundabout. He suffers severe brain injury leaving him unable to talk or understand even simple commands. He is now in a nursing home, dependent on others but seems quite happy. He develops a kidney infection, treatable with antibiotics. Without antibiotics he is likely to develop septicaemia and may die. Should Mr Kenieval’s kidney infection be treated? Does respect for Mr Kenieval’s previous decisions made when autonomous unjustly override his current right to life or our duty to show him equal respect?

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Disability and Justice at the Beginning of Life Abortion is a criminal offence unless:

a) The pregnancy is less than 24 weeks and that the risks to the physical and mental health of the woman or any children in her family are greater if the pregnancy were continued.

b) It is necessary to prevent grave and permanent injury to the mother. c) Continuing pregnancy would involve a greater risk to the life of the pregnant woman than

termination. d) Substantial risk of serious physical or mental handicap.

An abortion can be performed at any stage on the grounds of serious disability. Few conditions are so awful that the baby could be said to be “better off dead”. Down’s syndrome accounts for 20% of abortions performed on the grounds of “serious handicap”. Is there an ethical difference between not wanting to be pregnant and not wanting to be pregnant with “THIS baby”? Is terminating a pregnancy on the grounds of disability any different from terminating on the grounds of sex or hair colour? Do these grounds imply that the lives of those with disability are less valuable? Do these grounds reinforce prejudice against those with disability? Disability is only a problem because society fails to adequately support those with disability. Parents of disabled children are often more worried about the social stigma than the physical limitations. Parents worry about who will look after their child when they die. Having a severely disabled child can put immense physical, emotional and financial strain on parents. Other children in the family might suffer as a result of this. Therefore, a woman should be able to choose not to go ahead with such a pregnancy. Autonomous choices should be respected. An autonomous choice requires that we are given a reasonable range of options. If society fails to ensure justice and provide an adequate level of support for those with disability does a woman have a reasonable range of options? Is the law regarding abortion on the grounds of disability discriminatory? Should the law provide clearer guidance on what constitutes “serious handicap”? Does the binding nature of Advance Decisions unfairly override the rights of individuals lacking mental capacity? Law makers must consider fairness, individual rights, public consensus, and policy implications. Most people in the UK think abortion beyond 24 weeks on the grounds of serious disability should be lawful. But if this is discriminatory does public opinion and consensus provide acceptable grounds for making such abortions lawful? If the law was more prescriptive as to what constituted a “serious handicap” in terms of grounds for abortion could this increase stigma and discrimination against those living with these conditions? Does failing to do so leave the way open for abortion for trivial abnormalities? Conclusion In summary, if healthcare is a matter for justice then we must ensure that equals have equitable access to healthcare. In practice, do inequitable healthcare decisions reflect how we value different individuals?

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Confidentiality by Dr Wing May Kong

A 42 year old Somalian is admitted with pneumonia. Tests show that he also has diabetes He does not speak any english. Inconsistencies in his story lead you to suspect that he is not a UK resident. What do you do? Why should doctors keep a patient’s personal information confidential? There are three ethical approaches for justifying confidentiality - consequences, autonomy and duty. Whether or not an action is morally acceptable is solely determined by its consequences. Patients are generally happy to disclose personal information because they trust doctors to keep their information confidential, and it is essential that patients disclose personal information for doctors to treat them appropriately. If doctors frequently breached confidentiality, patients would lose trust. As a consequence patients would be unwilling to disclose personal information. Tell the authorities… Consequentialist approach: reporting to the authorities may help reduce illegal immigrants using the NHS when they are not entitled and may also reduce illegal immigration on the whole. Most patients are not illegal immigrants, and so informing the authorities won’t reduce trust in the medical profession. Counterarguments to this are that you may be wrong about the consequences (it won’t have any real impact on illegal immigration or the NHS finances) and this permits doctors to breach confidentiality whenever (provided the patients don’t find out!). A GP sees Ms R, a young woman with recurrent genital warts. During the consultation she mentions that she is trainee solicitor. It turns out that she is working for his wife. That evening, the GP tells his wife about Ms R. His wife tells no one else. Respecting autonomy should be seen as a fundamental principle in medical ethics. Therefore an action that does not respect autonomy is not morally acceptable whatever the outcome (unless there is a justifiable reason for limiting autonomy). Individuals consider it very important that they control who has access to their personal information. Therefore control over one’s personal information is an expression of autonomy. Therefore respecting autonomy requires us to keep personal information confidential unless we are given permission to disclose. However it is permissible to override autonomy when there is serious and real harm to others. Tell the authorities… Autonomy approach: providing healthcare for illegal immigrants is a significant drain on NHS resources. This leaves fewer resources for those entitled to NHS care. So you could argue that illegal immigrants using NHS resources cause serious harm to others, therefore it is acceptable to override their autonomy. However, this does not help us in situations involving infants and young children, adults with mental incapacity or dead patients. Mr K, the former head of surgery, is brought into hospital following a car crash. He is wearing lacy knickers and a suspender belt. He dies in A+E soon after arriving. The next day you bump into a surgeon who used to work with him and tell him about Mr K’s choice of underwear. Certain actions are morally required and others are morally impermissible whatever the outcome i.e. we have certain moral duties. When a doctor gains personal information about the patient there is an implied promise that this information will be kept confidential. There is a moral duty not to break promises. The duty is owed to all your patients, therefore it is wrong to breach confidentiality unless we are given permission to disclose. Don’t tell the authorities… Duty approach: your primary duty is to your patient not to the general public. You have a duty to keep information confidential. Your duty is to be a doctor, not a policeman. The problem with the duty based approach is that you are not allowed to disclose without permission. So what about serious crime? Suspected child abuse? Relatives of a dead patient? The two parties to the promise of confidentiality are the doctor and the patient. The doctor is a public servant. The patient is a public citizen. The patient has a moral duty not to commit serious crime. If the patient commits a serious crime has be breached the terms of the promise?

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The implied promise to maintain confidentiality operates for all patients. However, with children and adults lacking capacity the doctor has an overriding duty to act in their best interests. Therefore personal information can be disclosed when it is in the best interests of someone lacking autonomy. But it will usually be in the patient’s best interests to only disclose to those involved in the patient’s care. Breaching confidentiality may be ethically justified if:

- The individual consents - It is in the best interests of an adult lacking capacity - It is in the best interests of a child - There is a real risk of serious harm to others - It is necessary for the legitimate functioning of the State (e.g. Public Health Surveillance)

But the information disclosed should be the minimum necessary. Disclosure should be only to those who need to know. In the case of serious harm, disclosure is likely and necessary to prevent that harm. As far as possible, individuals are told how their information will be used. The legitimate functioning of the State is transparent and open to challenge. What about protecting individuals from harm to themselves (e.g. domestic violence)? What about disclosures that may damage the doctor-patient relationship (e.g. DVLA)? What about preventing crime in general (e.g. fraud or theft)? And what about shared health information (e.g. genetic tests, maternal hepatitis B)? General Medical Council

Confidences must be respected.

Consent by patient is the primary exception to the principle of keeping confidential information secret.

But, where secrecy would risk death or serious harm to the patient or another, then disclosure is allowed.

Patients should be told at the outset how information about them is to be used.

Personal information can be disclosed in the public interest but this must be exceptional. In practice, most breaches of confidentiality are inadvertent. For example, discussions on the wards, memory sticks, patient lists / log books, clinical presentations, or sharing information with other students. Conclusion In summary, the ethical duty to maintain confidences can be defended on consequentialist, autonomy and duty grounds. Each approach permits breaching confidentiality in certain situations. When considering whether it is appropriate to disclose confidential information you should reflect on the ethical arguments for and against breaching confidentiality.

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Resource Allocation by Dr Wing May Kong

Many different approaches have been proposed to the ethical issues of resource allocation. Utilitarian Approaches A utilitarian approaches favours choices that maximise utility. Utility has been variously defined. Thus a utilitarian approach might favour the choice that saves the most lives or produces the greatest reduction in pain or produces the greatest happiness. At first sight this approach, might seem fairly uncontroversial. However, this approach may lead to some difficult conclusions. Helping people stop smoking or lose weight might in the long run save the maximum number of lives. A utilitarian approach might conclude that we should therefore devote our healthcare resources into stopping smoking or treating obesity rather than treating people with heart attacks or strokes. Even pain reduction raises problem with a purely utilitarian approach. Using a utilitarian approach might favour subsidising a condition that causes a relatively minor amount of discomfort but to a large proportion of society e.g. dysmenorrhoea over a condition that causes very severe pain but to a very small number of people. Thus one problem with putting a utilitarian approach into practice is that it does not seem to take account of all the ethically relevant factors. The QALY (quality adjusted life years) attempts to get around this problem by calculating a QALY score for different healthcare interventions. The QALY approach looks at the average life expectancy following a given intervention and then adjusts this for the quality of life the individual can expect following the intervention. 1 year of perfect health is given 1 QALY. Death scores zero and a year of less than perfect life scores between 0-1 depending on the extent of ill-health/disability. The cost of the intervention can then be divided by the number of QALYs gained to give a cost per QALY. Different interventions can then be compared based on the cost per QALY for each intervention. A major criticism of the QALY approach is the way in which quality of life scores are derived. The scores are based on a range of questionnaires which focus largely on medical and physical limitations. The fact that an individual needs assistance with daily activities or feels that their life is limited by their medical condition does not necessarily mean that they consider their quality of life poor – one survey found that quadriplegics assessed one year after their original spinal injury rated their quality of life on slightly poorer than prior to their quadriplegia. The QALY system is also criticised as being inherently biased against those with disability; a given intervention will always have a lower QALY score in someone with a disability, irrespective of the success of the intervention itself, because a disabled person can never achieve ‘perfect’ health. Age Based Approach Healthcare professionals are often criticised for being ageist in their approach to healthcare allocation. However, some commentators have argued that ageism is ethically appropriate. One argument is that we should aim to maximise the number of lives saved and therefore allocating scarce resources to younger patients with a longer life expectancy will save more years of life than treating older patients. However, this seems to over simplify what it is that we value about our lives. Imagine if doctors in the future could accurately predict your life expectancy; you are told that you can expect to live to 79. Would you value your life less if they contacted you the next day and said that they had made a mistake and in fact you life expectancy was 77 years? Others have modified the age based argument into a ‘fair innings’ argument which proposes that at a certain age, say 75 years, an individual can be said to have had a ‘fair innings’ and that therefore any additional life after this time should be seen as a ‘bonus’ that does not warrant public resources other than perhaps basic nursing care to maintain dignity. Would this be unfair to someone who has never had a significant illness until his eminently treatable appendicitis at the age of 76? Would we allow over 75s to privately pay for healthcare? If we did we would be left with huge health inequalities in the over 75s, with some dying of readily treatable conditions because of personal poverty. For many this would be unacceptable. Also how do we decide what should be the ‘fair innings’ cut-off. One might guess that not many over 75s would vote for a cut-off of 75!

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Social Worth Approach Should individuals who have made a greater contribution to society have a stronger claim to limited healthcare resources? What about people who have a greater potential to contribute to society in the future. The latter approach would favour treating young people over older people because the young have more years to contribute to society. A social worth approach seems very appealing. Surely people who have put more of their personal time and effort into furthering the good of society deserve healthcare resources more than those who have used their time and energy for more selfish pursuits? There is, however, a significant practical problem – how do we determine social worth? We all have different ideas as to what constitutes a valuable contribution to society and we have a tendency to identify with those ‘good deeds’ that concur with our own personal values. Does the father who voluntarily coaches the local youth centre football team have more social worth than the hospital secretary who covers for the sick leave of her colleagues to ensure that hospital letters go out in time? Do high earners have more social worth than lower paid workers since they pay more back in tax? Many would consider this suggestion as unfair. There are many factors other than personal effort that determine what kind of job we end up in e.g. parental employment and education; ethnic background, schooling etc. Many of these are beyond the control of the individual and therefore it is unfair to allocate resources on income. However, this argument could be applied to other interpretations of social worth. Being in a particular job, having a particular education, or a certain type of family may open up opportunities to ‘do good’ which are not presented to others. What about people with children? Should they have priority over those without children? (Or perhaps we could argue that those with children have already enjoyed richer lives through having children and therefore have had more of a ‘fair innings’ than those without children!). If a mother of 3 is denied life saving treatment, the lives of her children will also be blighted. However, many people without young children will have dependents or loved ones whose lives will also be harmed or blighted if they die. Also who would be more deserving, a mother of three teenage children or a mother of one 6 year old? However, these are essentially practical arguments against using social worth to determine resource allocation. Let us imagine that we had a robust, objective and fair method of assessing social worth. The key ethical question still remains as to whether, if one person is more socially worthy than another, this should give that person a greater entitlement to healthcare resources. If we were to ask whether being taller should give an individual greater entitlement to healthcare resources most people would say obviously not, because height is not a morally relevant factor here. So the question we need to consider is whether social worth is a morally relevant factor in healthcare decisions. Personal Responsibility Approach A recurring suggestion from many parts of society, including some healthcare professionals, is that individuals who are personally responsible for their ill health (e.g. smokers with lung disease) should have less entitlement to healthcare resources than those who become ill through no fault of their own. Again, there are practical difficulties in determining personal responsibility. If I smoke and I develop coronary artery disease to what extent is that my fault? Many people smoke and don’t get coronary artery disease and many non-smokers do get coronary artery disease. Therefore, how can we be sure that my coronary artery disease was due to smoking rather than the unfavourable genes that I inherited from my parents, my unfavourable intrauterine environment before birth or the ludicrous working hours that my employers impose on me? Also, even if it could be shown that my atherosclerosis was the type only seen in smokers; to what extent am I personally responsible for my smoking habit? We know that many factors which we have little or no control over including parental smoking, social background, education, mental illness and genes are all associated with the likelihood of being a smoker. However, continuing this line of argument we could end up in a situation where we say that all our actions are ultimately socially or genetically determined and therefore we have no personal responsibility at all! Few people would find this an acceptable position. Nonetheless, it is perhaps reasonable to say that to determine fairly the extent to which an individual is personally responsible for his/her ill health is far from straightforward. However, again, even if we did have a robust and fair way of determining personal responsibility, is it a morally relevant factor in healthcare allocation decisions? Like age and social worth, personal responsibility seems intuitively to be relevant in health care allocation. However, there is no a priori reason why this should be so. Arguably, to work out what factor(s) is/are morally relevant in healthcare allocation we need to first consider why healthcare itself is morally relevant.

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Healthcare and Justice Most people do not think that the distribution of iPods or holidays abroad as ethically significant – they are just a reflection of how we choose to spend our money. Most people agree that some degree of wealth inequality is morally acceptable even though poverty is highly associated with mortality. However, most would think it unacceptable if one person was given dialysis rather than another simply because s/he could afford to pay for it. Is this irrational or does it reflect something morally special about healthcare? One argument is that the distribution of healthcare unlike the distribution of iPods or holidays abroad is a matter of justice. There are many aspects to what we mean by justice but one key aspect is the concept of treating people as equals. Thus, if someone is murdered, the State should try to arrest and punish the murderer irrespective of the age, religion, race of the person murdered. To do otherwise would imply that certain lives were less valued than others. We consider the State’s duty to protect us from being murdered as one that it owes to everyone equally. Arguably, this is because our lives are what most of us value most. Obviously, illness can shorten our lives. However, so do poverty or a poor education. Also, many illnesses will affect the quality rather than a quantity of our lives. Therefore, it is not immediately clear why healthcare should be a matter for justice in the same way as our right not to be murdered. One argument is simply that our present society values healthcare highly and that our response to illness and pain is reflection of how we value our fellow citizens. According to this view then distributing healthcare according to age, social worth or personal responsibility would be as unacceptable as punishing murderers according to the age, social worth or personal responsibility (‘the woman chose to walk down a poorly lit side street’) of the victim. That said, there are commentators who disagree with this position. It has been argued that there is nothing morally special about healthcare and that it should simply be seen as another way in which we can choose to spend our money. If some people cannot afford healthcare then that is simply bad luck and no more morally significant than if they cannot afford to live in a nice neighbourhood with low crime rates. Interestingly many proponents of this view are from the US where the healthcare structure and healthcare inequalities are very different from here and the rest of Europe. It is also argued that the process by which resource allocation decisions are made is as important (or even more important) than the criteria by which such decisions are made. Thus many people agree that the decision making process must be transparent, accessible and include clear routes for appeal against what might be perceived as unfair decisions.

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Consent, Capacity and Refusal in Adults by Dr Wing May Kong and Dr Michael Fertleman

Consent and Refusal: Legal Principles The law requires permission from a patient before treatment can occur. This permission is called consent. It is required for any form of medical management - from taking a history, conducting an examination through to interventional treatments such as operations. When permission is not granted by a patient, the patient has “refused to consent”. You must have consent from a patient, even as a medical student. All Healthcare Practitioners must have permission from patients before they start. This includes getting consent for taking a history, conducting a physical examination, or performing basic tests like phlebotomy. Some patients will refuse to have a medical student talk to them or examine them - this is the right of a patient and however upset or annoyed that the medical student feels, the patient’s care must not be adversely affected. David is a very gifted and motivated medical student, who even in the fifth year knows that he wants to be the next Professor or Gynaecology. On his O&G attachment he is keen to see (and to be seen to see) many new patients in the multigravida clinic. He calls Mrs Satsuma and explains that he will see her before the consultant. Mrs Satsuma refuses, and says loudly that she “doesn’t want to be a guinea pig”. When no one is looking, David angrily puts her notes to the bottom of the pile. We can sympathise with David - keen and motivated, and then feeling humiliated that the patient won’t see him. However, he should overcome these feelings and not adversely affect the care that she receives. He has contravened one of the GMC principles as laid out in Good Medical Practice. Acting without consent can result in court action. If a doctor acts without the consent of a patient then he may have committed the following offences:

- Criminal offence: assault and battery - Civil action from patient: claim for damages

Exceptions to Consent There are some situations when consent is not required. Some patients imply permissions through their actions, such as lifting up a top when asked permission to examine. Usually we should rely on express consent, either oral or written permission, particularly for invasive treatment. Some patients waive consent. They don’t want to know the details and just want the treatment to occur. Be careful who is attempting the waiver - fine if it’s the patient. More often it’s the relative who doesn’t want the patient to know the details of their condition. Without good reason, the doctor must not put himself in the position of agreeing to such a waiver. In certain situations it is not possible to obtain the permission of the patient. They may be unconscious or have severe dementia and thus not able to take part in a discussion about their treatment. In such situations, where the patient lacks capacity to give consent (is not legally competent to give consent), the doctor must act in what he believes to be the patient’s best interests. Valid Consent This is a competent person that understands the nature of the treatment based on information in “broad terms” without coercion who then gives their permission. A competent person understands the information, retains the information, uses the information to make a decision and communicates their decision. If a patient falls at any one of these hurdles, then they are not competent. The information that the patient must understand is only that information which is relevant to the discussion. Therefore a patient may have the ability to understand the consequences of treating pneumonia but not to make a will. Adults (from age 16 upwards) are assumed to have mental capacity to make a decision regarding treatment, unless there is contrary evidence.

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Children (less than 16) are assumed to not have mental capacity to make a decision regarding treatment, unless there is contrary evidence. The legal situation regarding individuals aged under 18 but 16 or older is slightly more complicated, particularly regarding refusal of treatment. B is a 51 year old machinist in a factory. In an unusual accident she has suffered severe crush injuries to both hands. The orthopaedic surgeon explains to B and her husband that she will require amputation of both hands with a view to further surgery to enable prosthesis to be fitted. B asks what the operation will involve and whether some sort of artificial hand would be possible at a later stage. After a lengthy discussion with the surgeon and her husband, B agrees to the surgery. However, she is unable to sign the consent form. Can the surgeon proceed on the basis of valid consent? Yes, provided her decision is informed and voluntary. A signature is evidence but not proof of consent. Legally valid consent is the process of obtaining non-coerced permission from an informed, competent individual. Thus oral or written express consent is legally valid provided it meets the criteria. In this situation, where there is a major procedure being proposed, it would be wise (but not legally required) to have the oral consent process witnessed and signed for by a second individual as further evidence that valid consent was obtained. If a doctor tells every possible side effect of a proposed treatment, then whilst the patient would be fully informed there is a danger that they will be overburdened by too much information and scared off from a potentially useful and safe treatment. If a doctor doesn’t mention any of the known common or serious risks of a procedure, then he would have not told the patient enough. A balance needs to be struck - and the courts have held that doctors must mention what their colleagues would mention for a similar procedure. Usually this involves mentioning both the common and the serious but rare side effects. If a patient asks a specific question then this must be answered truthfully. The agreement of the patient must be from the patient alone. Sometimes a patient may agree to a treatment only under the pressure of a relative or friend. It is fine to discuss one’s concerns with friends and relatives, but when their advice turns into coercion then the patient must be removed from the coercive environment and the discussion repeated. Refusal If a patient who fills the criteria for competence when given information in broad terms, refuses and they are not under coercion, then they have refused the treatment. In this situation, even if the proposed treatment seems to be in the patient’s best interests or is potentially lifesaving, you cannot proceed without their consent. Treating them against their will would be an offence and so therefore their refusal of treatment must be respected. If, however, a patient fails to meet one of the criteria for competence then it is not possible to obtain consent from the patient. In this situation the healthcare practitioner is obliged to act in the patient’s best interests. No one can consent on behalf of an adult who lacks mental capacity unless they have been granted specific legal authority by the Court of Protection to do so. Conclusion In summary, valid consent must be competent, informed and voluntary. No one can consent on behalf of a competent adult. A competent adult has an absolute right to refuse medical treatment.

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Confidentiality and the Law by Dr Wing May Kong and Dr Michael Fertleman

The basic legal principle is that information gleaned by a healthcare professional should not be divulged to others. Exceptions to this rule are if it is with consent, if required by law, or if in the wider public interest. Exception 1: Implied Consent in the Multidisciplinary Team Implied consent by presence is a very common but an unusual example of consent. Rather than express consent (patient says “yes” orally or in writing) we imply that the patient consents to us telling the wider team about their condition, through them being in hospital and realising that other people will be looking after them too. Be careful about telling other medical students about a patient. Exception 2: with Express Consent You cannot rely on implied consent when breaching confidentiality to others who are not actively involved in the patient’s care. The patient must expressly give their permission - how much information to be divulged? To whom? Unless it’s a parent of a child who is not Gillick competent, relatives do not have a right to know in most cases. In situations of a patient who lacks competence to make a decision about healthcare, the next of kin now have a right to be consulted where practical to do so. When in doubt about the nature of the information, the form of the disclosure, or to whom, then get express consent. Exception 3: Required by Statute Statutes are laws that are passed in Parliaments. Examples requiring a breach include notification of death, notification of termination, treatment of drug addict with specified drugs, and notifiable infectious disease. In these cases permission of the patient is not required, and the relevant authority must be informed. Exception 4: Assisting the Police The general principle remains the same. Exceptions:

- Under a warrant from a circuit judge - To aid police request in identifying drivers suspected of offences - To aid police in all matters with suspected terrorist patients

Exception 5: Wider Public Interest This is the balance between duty to patient and duty to society, which may be challenged and you must justify your action (or inaction). Children The welfare of a child is paramount. The decision to maintain or breach confidentiality is based on best interests. If the child is <16 and not Gillick competent, the doctor can breach confidentiality if it is in the child’s best interests (or with parental consent). If the child is Gillick competent then he/she can give or refuse consent to disclosure. But confidentiality can still be lawfully breached if it is still in the child’s best interests. As a medical student it is important that you do not enter into an agreement with a child whereby you agree to keep whatever they tell you a secret. You may find that what they tell you compels you to inform someone and that would ruin the trust that the child has with you and future members of the team. If the child is over 16 then he/she is presumed competent and disclosure should only be made with their consent. But confidentiality can still be lawfully breached if it is in the child’s best interests up to the age of 18. However, it will generally not be in the best interests of a competent child to override their competent refusal. Conclusion In summary, a legal duty of confidentiality is owed to all patients and continues after death. The primary exception to this duty is the consent of the patient. Consent may be lawfully breached if there is a real risk of serious harm to others and that harm can be prevented by disclosure. In adults lacking mental capacity and in children confidentiality may be lawfully breached provided it is in the individual’s best interests to do so.

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Children and the Law by Dr Wing May Kong and Dr Michael Fertleman

The Children Act 1989 was a landmark piece of legislation. It consolidated much of the previous legislation regarding children in England and Wales. The Act set out the obligations that local authorities have for children. A smaller part of the Act deals with children who are living with their parents, as opposed to living under the care of the local authority. As with many modern Acts, the first section outlines several principles that apply throughout the Act. Section 1.3 The child’s welfare is paramount. It sounds obvious but the Act clearly states that everything that is done by a local authority, a court or any person for that matter, must have the welfare of the child as paramount. The rights of the parents are secondary to the welfare of the child even if this creates an unjust situation for either or both of the parents. It is relevant to doctors and other healthcare professionals for example in situations of obtaining consent, refusal of treatment, and disclosure of information. Section 1.5 Presumption of no order. The Act assumes that in most cases the courts will not force an order upon the parents or upon the Local Authority. Court orders will therefore only be made where this will benefit the child. There is a requirement for local authorities to work in partnership with parents for the welfare of the child. The Welfare Principle in Practice Wherever possible children should be brought up and cared for within their own families. Children should be safe and protected by effective intervention if they are in danger. Agencies should work in partnership with parents insofar as it does not prejudice the welfare of the child. Children should be kept informed about what happens to them and their wishes and feelings taken into account (considered in the light of their age and understanding). They should have the opportunity to participate in decisions made about their future. Parents continue to have parental responsibility in relation to their children, even if their children are no longer living with them. They should be kept informed about their children and participate in decisions made about their future. Parents with children in need should be helped to bring up their children themselves. Parental Responsibility A cornerstone of the Act was giving parents Parental Responsibility. Having Parental Responsibility gives either or both parents the right to decide for their children decisions that most take for granted. The Children Act effectively outlined how the courts would view matters when relations broke down between the parents, or where the Local Authority felt that the parents were not capable of looking after their children. There can be a variety of people with Parental Responsibility:

- Both parents (if married at birth or both on birth certificate) - Mother only (if unmarried and no agreement with father) - Legally appointed guardian - Local authority with care or protection order

Abuse of Children The Act provided details of the types of situations whereby the local authority is obligated to intervene. Categories that exist are physical, sexual, neglect, or emotional abuse. Each local authority is required to keep a list of those who are considered “at risk”. Consent for Medical Treatment The Family Law (Reform) Act 1969 states that the age of consent to medical treatment is 16. For patients below 16 only those who have parental responsibility can agree to medical treatment for the child. Although Parental Responsibility ends at 18, some of the powers of being able to agree to medical treatment on behalf of a child end at the child’s 16

th birthday.

If there are several people with parental responsibility then it is acceptable to gain permission from only one of them. For major decisions where there is parental disagreement it is advisable to seek court approval.

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In an emergency when no one with parental responsibility is available then medical treatment or surgery can be given without consent under the legal principle of necessity. Treatment is legally necessary if it is in the patient’s best interests and cannot wait until consent can be obtained. The Gillick Exception This case allows, under certain conditions, a doctor to obtain permission for treatment from the child without consulting those with parental responsibility. In the Gillick case, Mrs Gillick discovered a leaflet in her GP’s surgery that stated it would be possible for girls under the age of 16 to obtain contraception without the knowledge of their parents. Mrs Gillick, with five daughters under the age of 16 at the time, brought a case to attempt to end this practice. She argued that it is an offence for a man to have intercourse with a child under the age of 16 and therefore this availability of contraception to minors was colluding in a criminal offence. The court held that it would be in the best interests of certain children to receive this treatment, if certain criteria are met. This exception allows the treatment of any child for any condition providing certain criteria are met:

1) Ask the child if you can tell one or both of her parents. If she agrees then she can be treated like any other child with her parent(s) permission. If she refuses then her confidentiality must be respected.

2) Assess how mature she is, in terms of the treatment. Does she understand what is involved with the treatment and its complications? If so she can be considered if…

3) She is likely to suffer physical or mental harm without the treatment and it is in her best interests to receive the treatment.

There is no lower age limit to Gillick competence. But clearly the younger the patient, the more the healthcare practitioner will have to justify how the assessment of maturity and best interests was made. Refusal of Treatment The Gillick case was about the availability of medical treatment to mature minors, who might otherwise not have access to such treatment. The judgement was clothed in references to “best interests”. The logical next step would be to assume that a child can therefore refuse medical treatment if they meet the criteria of Gillick competence. But this would rarely be in their best interests, and so therefore children cannot refuse medical treatment. Furthermore as parental responsibility for the courts (as opposed to parents) ends at 18, it is theoretically possible to overrule a refusal of a patient and ask the court for permission. This court permission would be necessary if the child was 16 or 17, but if younger it is usually possible to obtain the permission of one of the parents, and hence proceed. Conclusion In summary, when making decisions involving children the welfare of the child is paramount. Treatment of children should proceed on the basis of consent wherever possible. However, in an emergency where consent cannot be obtained treatment can be given if it is in the child’s best interests. A minor under 16 is presumed incompetent but may be Gillick competent. A minor over 16 is presumed competent. A Gillick competent child can give consent to treatment, however a Gillick competent refusal can be overridden if the treatment is in the child’s best interests.

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The Mental Capacity Act by Dr Wing May Kong

The Mental Capacity Act 2005 can be seen as providing a statutory framework for decision making involving adults who lack mental capacity. It defines statutory principles, the concept of mental capacity, and clarifies the concept of best interests. The Presumption of Capacity states that all adults are presumed competent unless shown to lack competence. Mental competence is task specific. It is important to ensure circumstances to aid understanding (e.g. language, setting, support, take account of fluctuations in mental competence). It is not diagnosis driven, there is a two stage approach:

1) Is there impairment of, or a disturbance in, the functioning of the mind or the brain? 2) Is the impairment sufficient to impair capacity?

Another important principle is regarding unwise decisions. A competent adult can refuse treatment for a good reason, bad reason or no reason at all as long as they have mental competence. A person is not to be treated as lacking capacity because they have made an unwise decision; it is not proof of mental incapacity. Principle of Equal Consideration Is there evidence of lack of capacity? Decisions should not be made solely based on an unwise decision, and decisions should not be made based on appearance, assumptions, age, race or gender. Criteria for Capacity An individual has mental capacity if able to:

1) Understand the information relevant to the decision 2) Retain that information 3) Use or weigh that information as part of the process of making the decision 4) Communicate the decision by whatever means (talking, signing, blinking, etc)

A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. So who assesses capacity? Any adult wishing to take action in connection with or on behalf of an individual thought to be lacking capacity will need to assess capacity. Expert assessment of capacity will only be required for a serious decision and when there is doubt or dispute. Families and carers are not expected to be experts. However, they need to have a reasonable belief in lack of capacity which, if challenged, is based on reasonable grounds. Decision Makers under the Mental Capacity Act Depending on the circumstances there are a range of people who may lawfully make decisions on behalf of someone lacking capacity - carers, healthcare professional, donee of LPA, court appointed deputy, or the court. The position of LPA (lasting power of attorney) was created by the Mental Capacity Act. All competent adults can create an LPA. An LPA can only be created when the adult has capacity. The creation of an LPA must comply with strict regulations and be registered with the Court of Protection. The person who has been given this power can only make decisions when the donor has lost capacity. The extent of decision making must be specified in the LPA: financial, personal, welfare decision making (including consent to treatment). The donee’s decisions must be in the person’s best interests. The donee of the LPA can only make decisions when the donor has lost capacity. The Court of Protection was also created under the Mental Capacity Act. It is part of the High Court, and has powers to make declarations. It makes decisions and appoints deputies in relation to LPAs. The court would expect that parties would try to resolve any dispute before applying for a hearing. The Court of Protection may appoint a deputy to make decisions e.g. if significant decisions need to be made on a regular basis that would otherwise probably go to court. The deputy must act in the person’s best interests. The Court defines the scope and duration of the deputy’s authority, and a deputy cannot refuse life sustaining treatment.

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Certain medical decisions should go before the Court of Protection for a determination of best interests. These include:

- Withholding or withdrawal of artificial nutrition from patients with persistent vegetative states - Organ donation or bone marrow transplants - Sterilisation for non-therapeutic purposes, e.g. contraception - Some termination of pregnancy - Major decisions where there is doubt or dispute about best interests

Best Interests and the Mental Capacity Act Unless there is a valid and applicable advance decision, then decisions made on behalf of a person lacking capacity must be in the person’s best interests, whoever is making the decision. An action or decision will not be in a person’s best interest if the same objective can be achieved in a way that is less restrictive of the person’s rights and freedom of action. If a particular action requires restraint then the restraint must be proportionate. The greater the restraint required, the less likely it is that the action is in that person’s best interests. In determining best interests, the principles of equal consideration and non-discrimination must be applied. Consider all relevant circumstances:

- Will the patient regain capacity? - Has everything been done to permit, encourage and aid participation? - Have the person’s past and present wishes, feelings, beliefs and values been considered? - Have the views of carers and close family been considered?

Life sustaining treatments may be lawfully discontinued if the treatment is not in their best interests. The decision maker must not be motivated by a desire to bring about the person’s death. Where there is doubt as to best interests a court declaration may be sought but there is no legal obligation to do so. Medical best interests do not necessarily equate with overall best interests. Healthcare professionals may often not be in the best position to determine overall best interests. Views of carers and close family are likely to be important. Supporting Those Who Lack Capacity Individuals making decisions on behalf of someone who lacks capacity must take all reasonable steps to maximise the involvement of the individual in the decision making process. Unless it is an emergency requiring immediate decisions, the family has a right to be consulted for all major decisions. Under the Mental Capacity Act there is a statutory duty to appoint an Independent Mental Capacity Advocate, if a person lacking capacity has no one to support them and there are:

- decisions relating to serious medical treatment, unless it is an urgent situation - proposals to move a person into long term care in a hospital or care home (for more than 8 weeks) - plans to move a person to a different hospital or care home

The Independent Mental Capacity Advocate represents and supports the person who lacks capacity so that the person may participate as far as possible in the decision making. They have to obtain and evaluate information, and as far as possible ascertain the person’s wishes and feelings, beliefs and values. They also ascertain alternative courses of action (e.g. different care or housing arrangements) and obtain further medical opinion if necessary. They can appeal to the Court of Protection if they believe that decision makers are not acting in the person’s best interests. Advanced Decisions and the Law The principle is that a competent person has the right to decline to undergo treatment, even if the result of his doing so is that he will die. This takes into account the State’s interest in preserving life and preventing suicide. Advanced decisions take precedence over a LPA unless the LPA was made later, and they also take precedence over consent by a Court appointed deputy. Best interests do not apply. The only exception is treatment under

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the Mental Health Act (i.e. cannot make an advance decision to refuse treatment under the Mental Health Act). Refusals of treatment must be informed, competent and voluntary. They need not be written, they can be witnessed as an oral statement, but the maker must understand the consequences of their decision. The only decisions not covered by the Mental Capacity Act are an advance decision cannot refuse basic nursing care, hydration and nutrition that is given orally. An advance decision will be invalid if the maker has competently withdrawn the advance decision or created an LPA after the advance decision and given the LPA the power to make the decision in question. An advance decision will also be invalid if the maker has acted in a way inconsistent with the advance decision. An advance decision may be inapplicable if there has been a significant change in circumstances not addressed in the advance decision (e.g. pregnancy) or if there has been a significant change in the prognosis/treatment of a condition since the advance decision was made. Advanced decisions to refuse life sustaining treatment:

- Must be in writing and signed - Must be witnessed and signed by the witness - Must specifically state that decision is to be respected even if life is at risk - Must indicate that the maker has taken into account circumstances that have changed from when the

decision was first drafted - It is the doctor’s decision as to whether a treatment is considered life sustaining

In practice, a doctor would be liable if s/he provided treatment in the face of a valid and applicable advance decision. If there are doubts over validity or applicability, you can treat in an emergency. In a non-urgent situation, you can apply to the Court of Protection for a declaration. A doctor would not be liable for providing treatment, unless he is satisfied that a valid and applicable advance decision exists. The Act requires that the health professional take reasonable steps to enquire whether an Advance Decision exists. A doctor would not be liable for withholding treatment if he believed that a valid, applicable advance decision required this. Changing your mind about advanced decisions:

- the withdrawal may be oral - can be withdrawn at any time as long as the maker is competent - once the maker loses competence it cannot be withdrawn

Conclusion In summary, all adults are presumed competent unless shown to lack capacity. Mental capacity is decision specific. Any decision made on behalf of an individual lacking mental capacity must be in the best interests of the individual. Advance decisions are the only situation where best interests do not apply.

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How to be an Ethical Doctor and Pass the Exam by Dr Wing May Kong

The modified essay question assesses your ability:

To recognise ethical issues in everyday clinical practice

To develop skills in ethical analysis and reasoning

To know and reflect on your professional responsibilities in medical practice

To critically appraise the law

To use this knowledge and skills to become better doctors The paper is an open book exam with a 75 minute Modified Essay Question worth 70 marks. The questions will cover:

- Ethics – 30 marks, - Clinical communication – 20 marks - PPD – 20 marks

A past paper is available on Blackboard in the Medical Ethics area under ‘assignments, exams and assessments’. No text books can be brought in, just 20 sides of printed/handwritten material including references. You will not have time to do your reading in the exam and you will not have time to work out detailed arguments from scratch. So you must have thought through and prepared your arguments before the exam. Make good notes that you can navigate through in the exam. Recognising ethical issues A clinical scenario with references will be released 4 weeks before the exam. In the exam you will be presented with the same scenario but with a series of questions interspersed into the scenario. Read the scenario and references. Identify the ethical and professional issues. You have 4 weeks so expect to be asked about some of the less obvious as well as obvious issues… Ethical reasoning and analysis Reflect on the ethical issues raised in the scenario with reference to the MEQ reading list. Reflect on the ethical issues. Read the references and course work. Consider the issues, reflect on the evidence and relevant arguments. Consider how the theory applies to this case. Establish YOUR position based on your reflection and analysis. When constructing an ethical analysis, have one argument per paragraph. In the first sentence, make the proposition. Then develop the argument, and add evidence (where applicable) to support the argument. Reflect on your position and your argument in the light of available empirical evidence. Use the evidence to support your ethical arguments, not replace them. Your conclusion needs to be consistent with your preceding analysis. Summarise the arguments and counter arguments. Identify which viewpoint, on the basis of your prior analysis, you consider to have greater validity. Appraising professional guidance You must know your obligations under Student Fitness to Practice guidance. You should be familiar with Good Medical Practice. Identify professional issues in the scenario and the relevant guidance in Good Medical Practice. Reflect on the ethical basis of this guidance. Appraising the law You are not required to know the law relating to medicine, but you may be asked to reflect on the ethical basis of a specific area of law. General exam technique

Read the questions Answer the questions NOT what you think the questions should be! Allow one minute per mark and stick to this! Your writing must be legible Plan your answers

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Generally 1 or 2 well constructed arguments with well constructed counter arguments and a logical conclusion will gain full marks

If the question asks for a conclusion – write something. No conclusion means no marks If you are asked for ‘x’ reasons give ‘x’ reasons, no more no less Some questions in 2 parts may say ‘x marks total’

Example question

i) Discuss the ethical and practical arguments for and against using best interests as grounds for withholding or withdrawing life sustaining treatment

ii) In the light of your answer to i) do you think that best interests provides ethically acceptable grounds for withdrawing or withholding life sustaining treatment in patients who lack mental capacity? (10 marks total)

References Use of references without explanation will not gain marks, and well constructed arguments without references can gain full marks. If you use a quote or argument from another author you must attribute this. Minor plagiarism may result in zero marks for the entire paper.

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MBBS/BSc Year 3 Exam Scenario

MBBS/BSc Year 3, 2011-12

Medical Ethics, Law, Communication Skills & PPD examination

Examination on 6 June 2012, 10 - 11.45 am (open book)

• Candidates are permitted to bring up to 10 sheets (20 sides, A4 size paper) of notes into the examination. Candidates are not

permitted to bring laptops or textbooks into the exam.

• The exam consists of 9 MEQs based on the pre released case study and 15 SBA questions

Scenario for pre-release

Dr Singh is a GP FY2 in Bradford. As part of his duties he visits a Convent in the city, where there is a residential/ nursing home

for nuns. On his weekly visit he is asked to see Sister Richards, an eighty seven year old woman, who has been acutely unwell for

the past 24 hours. According to her medical records Sr Richards has a history of breast cancer, which was treated with a

mastectomy in 2005. She was discharged from the breast clinic in 2010. She is taking regular medication for hypertension, and is

generally mobile within the grounds of the convent, although her arthritis prevents her from walking more than short distances.

On the last visit a month previously Dr Singh recalls having a conversation with Sr Richards who appeared lucid, and was able to

comment on how much she enjoyed seeing the garden from her window.

During his assessment of Sr. Richards it appears that she is difficult to rouse and has a Glasgow Coma Scale of 10 (she is opening

her eyes to speech, withdraws to pain, and moaning inappropriate words).

The rest of the clinical assessment fails to provide Dr Singh with a definite diagnosis, although possibilities include a

Cerebrovascular Accident (CVA) or sepsis from a chest or urinary tract infection.

Dr Singh discusses his findings with the Community’s Mother Superior, who is of the opinion that Sr Richards should remain in

the Convent, and be kept comfortable, since through her knowledge of Sr Richards she believes that this is in line with her

wishes.

Dr Singh agrees to leave Sr Richards in the Convent and returns to the practice. However, he feels uncomfortable about the

decision not to treat Sr. Richards and decides to discuss the case with his clinical supervisor, Dr Evans.

During the discussion, Dr Evans suggests that he try to establish whether Sr Richards had made an advance decision regarding

treatment in the event that she lacked capacity. Following a phone call to the Convent the following signed but unwitnessed

statement is faxed through to the surgery:

Choices for Treatment and Decision Making

My life has been committed to the service of God and of his people as a religious sister in the Congregation. In order to protect

the values of simplicity, poverty and obedience by which I have lived I wish to make the following requests:

Normally, I wish to be consulted about my treatment as much as possible. In the event of my being unable, for whatever reason,

to make my wishes known, I consent to receive such treatment as will relieve my pain and suffering and make me more

comfortable. I consent to such treatment even though it may shorten my life. However, in case of life-threatening, irreversible

illness or accident, I wish no disproportionate measures to be used to prolong or sustain my life. In case of doubt please consult

my Mother Superior whom I wish to decide on my behalf. I will accept whatever treatment is deemed in my best interests by

them and on behalf of the Community.

Dr Singh decides to discuss this case with his clinical supervisor Dr Evans, who points him towards the relevant section of the

Mental Capacity Act code of practice.

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Despite no treatment Sr Richards makes an unexpected partial recovery. Dr Singh is able to talk to her and discovers that she

has been suffering severe back pain for many months.

Dr Singh examines Sr Richards and finds localized bony tenderness in the thoracic spine and a hard craggy liver edge on

abdominal examination.

She declines any tests but agrees to take analgesia. A Macmillan nurse is asked for advice. Over a few weeks the analgesic doses

are gradually stepped up, but even on large doses of MST (Morphine Sulphate, a strong opiate pain killer) Sr Richard’s pain is

not controlled.

One morning the Macmillan Nurse leaves a message asking for an urgent visit to set up a syringe driver as Sister is now

vomiting. The nurse has had to go to a Team meeting and cannot help further but she has left the equipment. Dr Evans says he

will cover Dr Singh’s morning surgery list. Dr Singh takes another hour writing up the prescriptions and getting these made up at

the Chemist. He was further delayed because his script for diamorphine had to be changed to morphine because the Chemist

cannot get hold of diamorphine. He then rushes off, confident that he can help as he has seen a syringe driver being put up

once before.

On arrival he finds that the Mother Superior is angry that he has taken so long to arrive and Sr. Richards is in pain and

distressed. The Mother Superior watches as Dr Singh gives an immediate IM dose of morphine, fills up the driver with a mix of

levomepromazine (an anti-emetic) and morphine that he guesses should be enough to last 24 hours. By the time he finishes

Sister Richards seems calmer.

Next day Dr Evans receives a fax from the Out of Hours Provider informing him that they were called overnight as Sister

Richards had slipped into a coma and died.

They also submitted a concern about the dose in the driver as it was three-times the correct conversion from MST (slow release

morphine sulphate tablet) to morphine in the syringe driver. The Mother Superior had been informed of this error.

Dr Singh returns to the convent. The Mother Superior is distraught as Sr Richards had not had the opportunity for a final

absolution. Dr Singh does not understand what she is talking about and replies to her that ‘as far as I am concerned I did

everything that should have been done’. The Mother Superior becomes more distressed and threatens to report him.

Dr Evans advises Dr Singh that he should inform the Coroner about his error. He does so. Later he receives a letter from the

GMC informing him that a concern has been raised about his fitness to practise.

The stress that this situation induces begins to affect Dr Singh.

Reading

S. Pattinson ‘Sanctity of Human life and the moral status of human beings’ in Medical Law and Ethics (3rd ed) 2011, Sweet and

Maxwell. Chapter 1, section1.4.3.1, pp17-19

S. Pattinson ‘The principle of double effect and end of life decisions’ in Medical Law and Ethics (3rd ed) 2011, Sweet and

Maxwell. Chapter 16, section16.2.1.1, pp572-574

Dworkin R. ‘What is sacred’ in Life's Dominion: An Argument about Abortion and Euthanasia. 1994. Vintage Books. Chapter 3 pp

81-85

How should we think about the interests of the child? J.Glover

‘Tribute and a clinical lesson in bioethics and quality of life’ C. Crisci, Journal of Medical Ethics, 1997;23:p18

The Mental Capacity Act, Code of Practice

Chapter 5 ‘What does the act mean when it talks about best interests’ and chapter 9 ‘What does the Act say about advance

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decisions to refuse treatment’

‘The doctrine of double effect and end of life decisions’ L. Tuckey and A. Slowther

Clinical Ethics March 2009;4:pp12-14

‘In whose best interests: who knows?’ H. Biggs, Clinical Ethics. June 2006;1:pp90-93

Gawande, Atul. The Checklist manifesto. Introduction pages 1-13. Profile Books 2010