What Doctors Don't Tell YouAs a competent adult, you have an absolute right to consent to or refuse medical treatment. The aura of omnipotence with which the medical establishment seeks to surround itself means that many of us who wouldn’t dream of letting a plumber tell us wh
The position, however, is complicated by the fact that very often a patient won’t know the full implications of what it is he or she is being asked to consent to. Legally, in this country, a doctor is obliged to tell you only what an informed body of opinion ie, he and his fellow doctors thinks you should be told. As we said in WDDTY Vol 2, No 1: “Even if you are an exceptional patient who takes an exceptional interest in your health, your doctor does not have to tell you what you’d like to know about alternative treatments, side effects, and so on only what he and his peers have decided you should be told.” Such continuing censorship hardly squares with the move towards greater openness being talked up by the government and others with the passing of the Access to Health Records Act (see box, p 2).
But what about your rights to determine treatment for other members of your family?
The position for children is more muddied. In theory, the law says parents can consent to or refuse treatment for their child until the child is old enough to understand and make his own decisions. However, the decisions of parents can only stand if they are deemed to be in the best interests of the child. If the doctor in question thinks your child is likely to be harmed by your refusal to assent to the treatment he prescribes, he may seek to override your opposition. In practice, for minor ailments this is unlikely to happen. But if you wanted, say, to reject chemotherapy in favour of alternative cancer therapies for your child, a doctor might well seek to intervene.
There are several courses of action open to him. He can call in the social services, who will investigate and can, ultimately, seek to take a child into care, in which case they would assume responsibility for its treatment. Or, he can seek to make the child a ward of court.
Wardship is a draconian measure which transfers all the parents’ decision making powers over the child not just concerning medical treatment to the court until it revoke the order. A lesser extreme under the new Children Act allows the courts to intervene for one off decisions, without devolving all powers away from the parents.
In theory, the courts would not favour one side over the other. Their role is simply to weigh the evidence and decide which course the one favoured by the parents or that favoured by the doctors really is in the child’s best interest. However, Ian Kennedy, professor of medical law and ethics at Kings College in London, says, in practice, the courts would almost by definition back the medical establishment. Their innate conservatism would lead them to favour “tried and tested” conventional medicine over an alternative approach.
“My view is that where it is life or limb threatening, a court would be quick to find that a parent choosing a non orthodox therapy was not acting in the child’s best interest,” he says.
Kennedy’s only advice is to get the medical team on your side early on to consider alternative approaches. “If it becomes a power battle and goes to court, the parents are almost certain to lose,” he warns.
If you and your spouse are at odds over your child’s treatment, it is worth bearing in mind that a doctor needs to consent of only one of you to treat lawfully. What this means in practice is that he’ll take the consent of the parent who agrees with him, so it is worth trying to reach agreement between you beforehand, if at all possible. Unless your partner knows your view, he may unwittingly consent to something to which you are violently opposed and the doctor will be able to go ahead with it. If you are at loggerheads and your spouse is determined to ignore your views, your only legal course is to apply to have your child made a ward and ask the court to decide on your behalf. This should not be attempted lightly. It is likely to prove an expensive and traumatic option not least for the child and, as we have said, the court will in all probability back the doctor.
The law provides for older children to make their own decisions over treatment. There is no fixed age limit: under the so called “Gillick test”, children can consent to or refuse treatment as soon as they have sufficient understanding to make an informed decision. The age will vary from child to child and also, from treatment to treatment. However, this provision is frequently ignored in practice. Doctors may simply overlook it so it may be worth your while reminding your doctor that your child has rights of its own as will the courts, which don’t seem to give the same weight to a child’s wishes as they do to an adult’s. One court, for example, decided that a 15 year old Jehovah’s Witness boy’s refusal of a blood transfusion should be overruled. The judge used the somewhat tortuous logic that even though the boy was capable of understanding the treatment, he probably didn’t understand what death was about. (The law would be likely to respect the wishes of an adult in that situation. Indeed, in Canada a doctor was fined $20,000 for administering a blood transfusion against a patient’s wishes.)
A leading family law barrister cautions that, because the age at which a child is deemed competent is a moveable feast, it allows scope for a doctor to argue that if a child doesn’t agree to the treatment being prescribed, he is not capable of making a sensible decision. In other words, the courtwill often assume that any sensible person would agree with the doctor.
Your rights over unborn children are clear. Increasingly, the US has upheld the rights of the foetus (as defined by the medical establishment) as paramount. American courts have ordered caesareans, over the opposition of the mother, ruled that pregnant cocaine abusers be jailed for treatment and even been known to commit a woman to a mental hospital because she was suspected of having intercourse when she was seven months’ pregnant.
Over here, however, the courts have resisted attempts by the medical profession to override the mother’s wishes, supposedly in the interests of the foetus. Attempts to make unborn children wards of court have failed. In pregnancy, you have exactly the same rights to consent to or refuse treatment that you would if you weren’t pregnant. Whatever your doctor might say, you are fully entitled to refuse scans, amniocentesis, or any of the other battery of tests he is trying to push on you; legally you may even resist a caesarean. Again, it might help to take some of the wind out of your doctor’s sails and some of the pressure off you if you simply remind your doctor of that fact.
What rights do you have to have a say in the treatment of your spouse if his illness means he is not capable of making his own decisions? Or of an elderly, senile parent? The short and sobering answer is none at all.
In law, no one has the authority to make a decision on behalf of an adult. If a loved one is unconscious or otherwise incapacitated, legally it falls solely to the doctor to determine what treatment is in the patient’s best interest. Good medical practice may dictate that the doctor ought to involve a patient’s family in determining the patient’s likely wishes, but he is not obliged to do so. If a doctor deems a particular course to be in the patient’s best interests, there is nothing the family can do about it.
This situation has given rise, particularly in the US, to the adoption of “advance directives” documents signed by an individual while fully competent setting out what he wants to happen in the event that he becomes incapacitated. In their most usual form, often known as “living wills”, these directives state that if certain conditions are met, the patient does not want medical intervention to prolong his life. A second and complementary directive, again used in the US, is an “enduring power of attorney”, which assigns the patient’s decision making powers to a relative or other third party.
As of 1 December1991, when the Patient Self Determination Act was adopted in the States, any American patient attending a hospital or any other kind of medical facility which receives Medicare/Medicaid (even if not a Medicare/Medicaid patient) must be informed of his right to refuse medical treatment and to write an advance directive. The right of medical self determination appears to have a long history in the States and was recently declared a federal constitutional “liberty interest” guaranteed by the 14th Amendment.
The most usual advance directives address the patient’s desire not to have his life prolonged by extraordinary technological means during extremely advanced illness. But theoretically, they can apply to any medical situation where you would be unable to communicate your wishes. You could detail, as many pregnant women do, how you wish your labour to be handled. Or write that you would refuse under any circumstance to take a certain kind of drug. You can indicate that you never want to have general anaesthesia, or communicate your desire, in the event of terminal illness, to be sent home and simply be made comfortable to die among your loved ones and cherished surroundings.
The legal status of living wills in this country has yet to be fully tested. At best, they give the doctor the option to comply with the patient’s wishes by withholding life prolonging treatment but they do not compel him to abide by them. Only the doctor can override the express instructions set out in a living will the wishes of relatives have no legal bearing.
An enduring power of attorney called a durable power of attorney in this country is not legally enforceable in the UK. However, it could be persuasive. It would send a very strong signal to a doctor of his patient’s wishes, which should prove hard for a conscientious doctor to ignore. It would certainly strengthen your hand in your discussions with the doctor over how he should proceed with your loved one’s health care.
To our mind, granting your nearest and dearest the right to act in your proxy (and discussing all your wishes in depth with them) is the most important medical step you can take. If you are incompetent, they are your only possible ballast against the overwhelming weight giving to your doctor’s opinion of your medical condition. How does he know? What gives him his certainty that you’ve had it? Louise Hay, author of Heal Your Body and an expert on the role of the mind in healing the body, is but one example of a supposedly terminal cancer patient who got better. Remember, once again, your relatives have no legal right, but the more precise they can be about your wishes, the more your doctor is likely to take them seriously.
In the event of the death of a donor card carrying patient, however, the wishes of the relatives prevail over those of the deceased. Doctors are under an obligation to seek the views of the relatives, who can veto the removal of organs for transplant.
If you decide to write a durable power of attorney, make sure that your solicitor and the person you are designating as your proxy have a copy. In the case of an advance directive, tell your doctor you’d like it to be part of your permanent medical record, keep another copy in a safe place and a little card in your wallet, indicating that you have an advanced directive, where it can be located, and who to contact as your proxy.
Fiona Bawdon, a senior reporter on The Lawyer, frequently writes for WDDTY on legal matters.
Maryon Stewart
Daniel Redwood DC
Tom Ferguson MD