ISSUES IN MEDICAL ETHICS
by Dr Stanley Pearson
[Dr Pearson, a recently retired senior consultant and lecturer at Leeds General Infirmary, is a local preacher in the Leeds (North East) Circuit]
Beginning of life decisions | End of life decisions | Consent | Individual v society | Responsibility of the patient | Medical research | Confidentiality
Background
The traditional view of medical ethics is that the doctor has a one-to-one relationship with his or her patient and will always act in their best interests. There is also the principle of confidentiality, that what passes between the doctor and patient is not available to any third party. Finally, there is the assumption that the doctor should be a person of probity, honest and law abiding and that he or she will endeavour to keep their medical practice up to the highest available standards
The assumption that every doctor is asked to sign the Hippocratic oath on qualification is not, in fact, the case – universities differ in their procedures but in my own case, qualifying from Oxford and London, I was never asked to subscribe to such an oath. The oath was formed in the 4th century BC. For those of you who are interested the full text is as follows:
I swear by Apollo the physician, and Aesculapius and Health, and All-heal, and all the gods and goddesses, that, according to my ability and judgment, I will keep this Oath and this stipulation – to reckon him who taught me this art equally dear to me as my parents, to share my substance with him, and relieve his necessities if required; to look after his offspring in the same footing as my own brothers, and to teach them this Art, if they shall wish to learn it, without fee or stipulation; and by that precept, lecture and every other mode of instruction, I will impart a knowledge of the Art to my own sons, and those of my teachers, and to disciples bound by a stipulation and oath according to the law of medicine, but to none other. I will follow that system of regimen, which according to my ability and judgment, I consider for the benefit of my patients, and to abstain from whatever is deleterious and mischievous. I will give no deadly medicine to anyone if asked, nor suggest any such council; and in like manner I will not give a woman a pessary to produce abortion. With purity and with holiness I will pass my life and practise my Art. I will not cut persons labouring under the stone, but will leave this to by done by practitioners of this work. Into whatever houses I enter, I will go into them for the benefit of the sick, and will abstain from every voluntary act of mischief and corruption; and further, from the seduction of females, or males, of freemen or slaves. Whatever, in connection with my professional practice , or not in connection with it, I see or hear in the life of men, which ought not to be spoken of abroad, I will not divulge, as reckoning that all such should be kept secret. While I continue to keep this Oath unviolated, may it be granted to me to enjoy life and the practice of the Art, respected by all men, in all times. But should I transgress and violate this Oath, may the reverse by my lot.
It will be seen that the oath covers a number of areas. It demands respect for one's teachers and outlines the duty to, in turn, teach others. It lays down the code of responsibility for the wellbeing of fellow professionals. It states that the good of the patient should come before other considerations and it forbids killing and abortion. It lays down the principle that the physician should only practise within the area of his training and expertise and that the practice of medicine should not be used to obtain other advantage, whether material or sexual. Finally, it lays down the principle of confidentiality.
The body responsible for the regulation of medical practice in Britain today is the General Medical Council, a body directly responsible to parliament, and on registration a doctor is bound by the rules and regulations of the GMC. It was established at the instigation of the British Medical Association under the Medical Act of 1858 and was designed to protect the public from unqualified practitioners as well as laying down some standards of conduct to be expected of qualified practitioners. Today, in addition to issuing licenses to practice, the responsibilities of the GMC include undergraduate medical education, disciplinary matters relating to the conduct of doctors, their health and fitness to practise, as well as laying down guidance in a range of specific areas such as consent for medical procedures, respecting the wishes and rights of patients, the conduct of medical research to name but three of many. There is also the recognition now that the successful practice of medicine depends upon a range of professionals apart from doctors acting as a team, often under the leadership of the doctor. One of the criticisms of the GMC in relation to its disciplinary function has been that it acts as prosecution, judge and jury and this is a worry to some. The emphasis of the activity of the GMC changes from time to time in the light of changing social and political requirements and the different areas of responsibility have been formalised in recent years in a series of publications such as Good Medical Practice. In practice, I think it is true to say that ethical issues are mainly regulated through the disciplinary functions and the focus has changed in recent years. When I first qualified issues such as advertising services were forbidden, whereas they are now allowed. Personal relationships with patients have always been tightly regulated because of the vulnerability of the patient and so too has any record of criminal convictions. The most important sanction available to the GMC is erasure from the register, which removes the right to practice and hence the livelihood of the doctor.
However, the big change that has occurred in recent years relates to accountability for professional standards of practice. This really began with the issue of heart surgery for children in Bristol where the poor results of the unit, when compared with other similar centres, were highlighted by one of the anaesthetists. A public inquiry followed and also disciplinary proceedings by the GMC against two of the surgeons, one of whom was struck off and the other required to undergo a period of retraining. Following this there were a number of high profile cases such as the gynaecologist, Rodney Ledward, which reinforced the need for change. (Contrary to the view often expressed by the media and some politicians, the case of Harold Shipman is not really relevant to this process. The issue there was not one of medical competence but one of murder by someone who was probably a psychopath, and it is doubtful if changes in the regulation of doctors could prevent a repetition of that). We are in the middle of a series of changes that include annual peer appraisal, examination of clinical outcomes and records of continuing professional education which, taken together, will provide the basis for revalidation and recertification of doctors every five years. It is likely, though not yet certain, that there will also be some formal test of knowledge (examination).
A modern statement of ethical principles in relation to medical practice is as follows:
- Do good
- Do no harm
- Act fairly and justly
- Do the best for as many possible.
Even a cursory examination of these reveals many areas of ambiguity and conflict and I will try and highlight some in what follows. For example, there is a conflict sometimes between what is best for the individual patient and the needs of society as a whole. This may include the issue of resources in a health service that is finite. There is the issue of patient autonomy, which sometimes conflicts with the needs of others for whom the doctor may bear some responsibility even if this is only as a fellow citizen. There is the question as to what extent a responsible adult should take some responsibility for their own health and the consequences of their behaviour. Sometimes there is a conflict that may arise between the religious beliefs of the doctor and the wishes of society that pays for the health service. Finally, no medical decision is unambiguous in the sense that good and harm often go hand in hand and it is usually a judgment as to the overall balance that is important.
I will try and cover these points under the following broad headings. The views expressed are personal ones and by no means expert and are not claimed to be comprehensive in the areas covered. It is hoped that this will stimulate discussion and debate.
- Beginning of life decisions, including IVF and genetic engineering
- End of life decisions, including the decision not to resuscitate or to limit the extent of treatment, the double effect and patient autonomy. To what extent can the patient dictate what happens at the end of life?
- Consent to treatment and capacity
- Availability of new treatments, the conflict between the needs of the patient and resources available
- The responsibility of the patient for their own health and the extent to which this should influence treatment
- The ethics of medical research
- The issue of medical confidentiality.
I will not cover the subject of contraception which, by and large, is not an area of contention for Protestant Christians. Most would consider that life begins at the moment of fertilisation (or possibly implantation in the womb). The advances in the methods to aid conception, however, have raised a number of issues. There is general agreement that it is legitimate to help the infertile couple to have their own family and that this should be a part of the services offered by the NHS. More contentious is whether the same facilities should be available to people without partners or to same sex partners.
There have also been a number of spin offs from the science of in vitro fertilisation that raise their own issues. Genetic manipulation is one. Whereas it seems prudent and reasonable to use the science to avoid known genetic defects which will impair the life and happiness of the intended child, there is unease at the prospect of selecting traits for social purposes since this presupposes the right to determine the attributes of another human being and also that we have the knowledge to predict what will be best for that individual and for society. A development of this is the selection of an embryo to produce a child with the characteristics to correct a genetic defect in an existing sibling by the use of stem cells from the umbilical cord of the foetus. Such a move has generally received a sympathetic response since it entails the creation of a normal embryo (one without the genetic defect of the older sibling) and the use of cord blood has no implications for the health of the newborn donor child.
The use of techniques of cloning raises further difficulties. Some animals have been created by cloning (Dolly the sheep, for example), but the process is not without its difficulties and dangers and success rates have been low. In the case of human beings the objective has been not to produce an implanted embryo but to create stem cells in vitro which can be used for medical research and, hopefully, as therapeutic tools to treat various chronic diseases, for example, Parkinson's Disease. This is an application that has recently received the sanction of Parliament in the most recent Health and Social Services Bill.
Abortion of a living foetus has been legal in the UK for some years since the legislation introduced to Parliament by David Steele. The act allowed abortion in certain defined situations but the time limits have changed with advances in postnatal care (independent life is possible at an earlier stage of gestation now than at the time of David Steele's original bill). Also there has been concern as to the interpretation of the criteria for abortion. Most people would be uneasy at the thought of abortion being simply used as an alternative to contraception; the bill tried to avoid this by specifying reasons such as danger to the health of the mother, physical or mental, severe disability in the unborn child and adverse effects on the health and well being of existing children. Despite this, the perception is that abortion is effectively available to all who want it within the constraints laid down by the time limits, and some would argue that this is better than allowing young women to take matters into their own hands with all the dangers associated with that. There is a conscience clause in the legislation that allows a health worker not to be involved in abortion on religious grounds, but there is an obligation on that doctor to inform the patient as to how they can access services to which they are entitled, so I think one could debate how meaningful the conscience clause is in practice.
Another area where advances in medical technology and knowledge have created ethical problems is in the area of postnatal care, which now enables the survival of babies who would formerly have died. The availability of the technology means that decisions now have to be made as to which babies should be accepted onto the units. The chances of survival have to be balanced against the risks of future disability. Decisions have to be made about the appropriateness of saving the lives of children with known congenital defects and this in turn is influenced by the availability of treatments to remedy these, which is a changing field. All these decisions require judgments as to what is meant by quality of life and in this respect many of the issues are similar to those that have to be faced when dealing with end of life decisions.
It is illegal in this country to take the life of a patient or to assist them in a wish to commit suicide. It is accepted that sometimes treatment is required to relieve suffering—for example, the use of opiates to control intractable pain, that may accelerate death—but this is allowed in law so long as the primary purpose is to relieve the pain and not to end the life, the so-called principle of the double effect. However, a more difficult area concerns the decision to withhold treatment or to decide not to start active treatment for some condition in the first place. We have the increasing ability of modern medicine to keep people alive by supporting bodily functions, for example, with artificial support for their breathing and circulation. This then often raises questions as to what constitutes meaningful life as opposed to simply existence. Furthermore, decisions have to be made in relation to all sorts of treatment, not just intensive care, as to whether the treatment is appropriate, whether the continuation of existing treatment or the starting of new treatment is justified in terms of the benefits it brings. To deny treatment or to withdraw existing treatment will usually accelerate or precipitate death and so there is a question as to the distinction that can be made between this and an active decision in favour of euthanasia or assisted suicide. I think some examples of the sort of clinical situations that arise might help with the understanding of the issues.
A person may be admitted to hospital with a dense stroke that leaves them unconscious and unable to swallow. After a time it becomes clear that the situation is not going to improve. In such circumstances it is common for the patient to develop a chest infection and it is also common for the decision to be taken not to treat this with antibiotics. Treating with antibiotics would prolong life for perhaps a few days or weeks but the outcome will be recurring infections and eventually death. Withholding the antibiotics recognises the inevitability of this outcome coupled with a judgment that the quality of the continuing life has no meaning for that individual. Withholding feeding by tubes or drips in such a situation now has the support of the law as I understand it. However, it is difficult to draw a logical distinction between ending life by withholding or withdrawing treatment and ending it actively by euthanasia and I am not sure what the legal position is. There has been a tacit agreement that the situation is best left vague rather than being legislated for.
Another example might be the patient with advanced malignancy where the decision might be taken to withhold chemotherapy even though this would extend life by a few weeks, because the cost of doing so in terms of side effects in a weakened patient would make such survival one of increased suffering rather than benefit. The decision to withhold may well be one that will accelerate the death of the patient.
These two examples might seem to be relatively clear but there is an infinite number of grades of complexity of decision. It becomes more difficult, for example, when trying to decide on the relative benefits of treatment when dealing with the severely physically or mentally handicapped such as the patient with advanced dementia. There has been quite a lot of discussion of this in the media recently where the medical profession has been criticised for the decisions it has made to withhold or deny treatment. Questions are asked as to who has the right to judge the quality of life of another human being.
The other side of the argument is that there is no right on the part of a patient to demand treatment that is judged not to be effective by the doctor. For example, there is no right for the patient to have a lung or heart transplant if the chances of a successful outcome are thought to be unlikely. A doctor cannot be forced to give treatment that he or she feels is unlikely to benefit the patient. In my own field of chest medicine a patient may present with a lung cancer that is surgically resectable—the only treatment that has been proved to cure a significant proportion of patients. However, other smoking-related damage to the lung or heart may make a successful outcome to surgery highly unlikely so that life might actually be shortened by the operation and any continuing life severely limited by breathlessness and other problems. In such circumstances it would be right for the doctor to refuse the option of surgery despite any wishes the patient might have to the contrary.
It is now common and recommended for the question to be asked in relation to patients admitted to hospital as to whether they should be resuscitated in the event of a cardiac arrest. It is considered good practice for this to be discussed with the patient and their family. Nevertheless, the decision at the end of the day remains a medical one. A patient and their family cannot demand that they be resuscitated. It is one area where the best intentions in the recommendation as to good practice can cause problems and distress, in my experience. Usually, a decision not to resuscitate is taken on the grounds that it is medically futile, that is, that the other problems the patient has make it unlikely that they will leave hospital alive even in the event of a successful outcome to the resuscitation. Furthermore, the chances of a successful outcome to the procedure in a patient with severe illness are very low. Posing the question often causes distress to an ill patient clinging to hope of recovery and also to relatives who often feel uncomfortable about being put into a position where they feel they are making such a decision on behalf of a loved one. Sometimes the discussion can lead to different answers from the patient and from their family, which can be a cause of further distress. If the procedure is judged to be medically futile then the reality is that there is no choice to be made and in such circumstances to pretend that the choice is there is unnecessary and dishonest. Some would regard a decision not to discuss the options as medical paternalism but I believe it is humane medicine and a proper shouldering of his or her responsibilities by the doctor.
Consent to treatment and capacity
If a patient has the capacity to understand the issues and make a decision then it is illegal to treat them against their wishes, even if this means that they may die. A Jehovah's Witness, for example, may choose to bleed to death rather than have a blood transfusion. If the patient lacks the capacity to make the decision, for one reason or another, then it can be made by a legally appointed representative if such exists, or by the doctor acting in the patient's best interests. A common situation in which such a decision might arise is in a patient admitted unconscious following an overdose of drugs. No discussion with the patient is possible. Sometimes this may have occurred by accident. Sometimes it is deliberate but not done with suicidal intent, more as a cry for help (parasuicide) and sometimes it is done with suicidal intent, but when the patient was in a disturbed but temporary state of mind. Occasionally, of course it is a rational decision to end life taken by someone with full capacity, but the doctor faced with such a patient in the receiving room in these circumstances would be duty bound to try and save their life.
Occasionally, patients and their relatives disagree about whether or not treatment should be given. Usually, the patient, often elderly, has decided that they don't want anything to be done and the children disagree, but sometimes it is the other way round. Either way, it is the patient's wishes that have to be respected rather than those of their kin.
Consent to treatment should be fully informed so that the patient can make a sensible decision about the risks and benefits. However, it is sometimes not easy to decide what information is relevant to this process. My elderly mother has frequently refused to take important medication because she would read avidly the insert in the boxes of tablets that gave all the recorded side effects. It was tempting to remove them before giving her the boxes, but I resisted this. In practice, discussion in relation to consent concentrates on the common issues rather than the very rare. It is now a requirement that the consent is taken by someone fully conversant with the treatment or procedure. This might seem like an obvious requirement, but in the past it has often been the responsibility of the most junior, newly qualified member of the team to get this administrative hurdle out of the way. That is no longer acceptable. It is not infrequent for the patient when considering different treatment options to say something such as “you make the decision, doctor” and this is a legitimate response so long as it is clear that they wish to delegate the decision in this way.
The needs of the individual versus the needs of society
Traditionally the requirement has been that the doctor should act in the best interests of his or her patient. However, it is also acknowledged that the doctor has a wider responsibility, sometimes to other patients and to the needs of society as a whole. There has been much publicity recently about the role of NICE (the National Institute for Clinical Excellence) because of its decision to limit the availability of some new cancer drugs on the grounds that the limited improvement in life span given by the drugs does not justify the cost of the treatments, bearing in mind that in a cash-limited NHS this would involve limits being placed on the availability of other well established treatments. It comes down to the equation of a few extra weeks or months of life for one person versus hip replacements or cataract operations for a much larger number. The result is that the individual doctor is not always able to give the patient sitting in front of him or her the best that is available. I believe the principle of NICE is right and proper and that it, in general, does a good job. The evidence is very carefully assessed and it is responsible for the government to ensure that the money it has is well spent and used for effective treatments that bring the greatest advantage to the largest number of people. Society has the right to decide how its money should be spent and what the priorities should be, but it does violate the principle that the only concern of the doctor should be doing the best for the individual patient.
However, sometimes the doctor has to make a stand on behalf of the individual, and an example from my own recent experience came in relation to one of the government targets known as the 4 hour wait. The principle of the target is a good one, namely, that sick people needing admission to hospital should be got out of A&E and into proper beds as soon as possible. Our Trust was failing to meet the target and solved the problem by moving patients to holding areas where conditions were even worse than in A&E but where the target no longer applied. This was wrong in principle and against the spirit of the target, and, fortunately, following a stand by the doctors, conditions in the holding areas were improved to make the situation acceptable.
The responsibilities of the patient for their own health
It is undeniable that much ill health is a consequence of our own decisions and the way we choose to live. Smoking cigarettes increases the risk of lung cancer, emphysema, heart disease, peripheral vascular disease, stroke and a number of other malignancies. Heavy alcohol consumption damages the liver, the heart, the brain and increases the risk of hypertension. The use of so-called recreational drugs is a cause of death and disability. The average lifespan of a heroin addict is around 27 years. The problem needs sensitive handling because many of the problems relate to addiction and the individuals have lost control of things. The general consensus is that treatment in such circumstances should not be conditional. Nevertheless, outcomes of treatment in patients who continue to smoke or drink alcohol are often poorer than in patients who do not and so there is an issue if resources are limited as to who should be given priority. It is, of course, right that society has a responsibility to minimise the risks of lifestyle though education and such measures as have been taken recently in relation to the use of cigarettes in public places. Occasionally, however, there are patients who are willfully irresponsible in their approach to life. I can think of patients who are multiple attenders at A&E with near fatal overdose taken simply to manipulate relatives. Equally there are people with diabetes or asthma or hypertension who chose not to follow treatment advice, and such people have to accept the responsibility for their decisions when things go wrong. When discussing the rights of individuals in relation to determining their own treatment as discussed in earlier sections, there has to be a reciprocal acceptance by the patient of their responsibility.
The ethics of medical research
The final stage of any medical research is that it has to be tested on patients. In the case of a drug this occurs after tests on animals and normal volunteers to minimise the risks. The principle of nearly all medical research is that the new treatment is either compared with an existing treatment to see if it is better or worse or with an inactive treatment (placebo). Usually this is done in a double blind fashion so that neither the patient nor the treating clinician knows whether the patient is taking the new treatment or an older one or, in some cases, an inactive treatment. As a general principle anyone in a medical trial tends to do better than patients treated outside a trial because of the extra supervision involved, but it is part of the structure of the research that one group of patients in a trial is likely to do worse than the other. This may be patients receiving the existing treatment or the placebo if the new treatment is better than what exists, or it could be the patients receiving the new treatment if this turns out to have unexpected side effects. Any patient taking part in medical research needs to understand that they are doing it not for their own benefit but for the potential benefit of future patients and they need to take part only if they have given their fully informed consent. Potential pitfalls in getting consent include the fact that patients tend to want to please their doctors and so go along with what is being suggested by them. If possible, recruitment should be undertaken by an independent person and not by the supervising clinician. Another pitfall is that the consent information may sometimes be too technical scientifically or too complicated legally and the patient may not be willing to admit that this is the case. It is important that the trial is explained in clear language for the lay person and that the arrangements for compensation are clearly laid out in the event of any unexpected adverse event. All medical research has to be approved by research ethics committees composed of a mix of professional and lay representatives to ensure that the project reaches acceptable ethical standards both scientifically and financially and that the interests of the patients are protected.
The information given to a doctor by a patient and any information relating to the care of that patient is confidential and this is crucial to the basis of trust that is so important to successful medical practice. However, my understanding is that the doctor occupies no special position in this regard in law and can be held in contempt of court if he or she withholds information that is considered important for court proceedings. In practice it is my experience that the police and the courts do respect the doctor's position in so far as they are able to do that but this is a courtesy rather than a right.
In the majority of cases the information that passes between a doctor and a patient has little impact on a third party and there is usually no issue about maintaining the confidence. Occasionally it becomes more difficult when, for example, the doctor has information about a patient which has an impact on the wellbeing of others or of society. For example, if it comes to the doctor's attention that a patient with poorly controlled epilepsy is continuing to drive a car despite being advised not to, and despite being informed of their obligation in law to inform the DVLA, what is the doctor to do ethically? Is it right to break the confidence to protect other road users from harm or should the principle of confidentiality be paramount? What should the doctor do who becomes aware that a patient with HIV is putting others, for example, a spouse, at risk by continuing with unprotected sex? In practice, most doctors would respect the confidence in this case and try to persuade the patient to tell his or her partner about the condition, but I am not sure that this is the correct thing to do ethically, to put another human being at risk by allowing the selfish behaviour of a patient on the grounds of confidentiality. It is not infrequent for a doctor to find that a patient is misrepresenting a medical history for financial gain, for example, in relation to an insurance or a benefits claim. Usually this situation resolves itself in that a medical report is required and, if permission is given for this, then the doctor can reveal the facts. If permission is not given then, of course, the claim usually fails. Although tradition says that the confidential nature of the doctor-patient relationship is paramount, there is, I believe, a reciprocal obligation on the part of the patient not to abuse this by asking the doctor to behave illegally or unethically in relation to his or her responsibility to others, some of whom may also be patients.
Closing remarks
The above are my thoughts on some of the issues relating to medical ethics. They don't claim to be comprehensive and not every one will agree with all the things I have said. There are probably some errors of fact in relation to legal issues. However, the intention is to stimulate debate and feed back and I offer them on that basis.