The impact of the Human Rights Act 1998 on medical decision making
October 2000
Which human rights are relevant?
Article 8 - Right to respect for private and family life
1. Everyone has the right to respect for his private and family life, his home and his correspondence.
2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.
This Article is very broad but its relevance to medical decisions relates, primarily, to the rights of individuals to confidentiality and to be involved in decision making about their treatment or that of their relatives.
In a 1989 case before the European Court (Gaskin-v-UK (1989) A man who had been brought up in local authority care sought access to files that the local authority had compiled about him. The Court held that Article 8 imposes a positive obligation on the state. Since the files contained information relating to his childhood and development, a lack of access was a breach of his Article 8 rights.). It was held that public authorities have a positive obligation to allow an individual access to files containing information about him or her. Although this case related to files held by the local authority, it is likely that a failure to allow individuals access to medical records concerning their treatment may also breach Article 8. Since the subject access provisions of the Data Protection Act 1998 came into force in March 2000, individuals have had a statutory right of access to the whole of their medical record (with limited, specific exceptions) and so Article 8 reflects existing access legislation in the UK.
In addition to allowing individuals access to their own medical records Article 8 may also impact on the amount of information to be provided for consent to be valid and informed. It could be argued, for example, that informed consent had not been obtained because a particular piece of information about the treatment was withheld. This does not mean that doctors must tell patients about every possible complication of the treatment however small, but that they must be able to show that they have taken into account the patients' Article 8 rights and be able to justify withholding information. Some forms of experimental or innovative treatment could also violate Article 8 unless the patient has been given sufficient information and has given a valid consent.
It is likely that Article 8 also extends to individual rights to be involved in medical decisions. The Court has taken the view that parents have the right under Article 8 to be involved in important decisions concerning their children (W-v-UK (1987) 10 EHRR 29.).
W and his wife had three children the youngest of which, S, was placed by his parents into voluntary care in 1979. In 1980, the Local Authority decided that S should not return home but should be placed with foster parents on a long-term basis with a view to adoption and that the natural parents' access to him should be restricted. W and his wife were not consulted about this decision and appealed against it. In 1984 an adoption order was made, relating to S, after the High Court decided to dispense with the parents' consent. W appealed to the European Court of Human Rights.
W argued that the procedures followed by the Local Authority constituted an interference with the exercise of his Article 8 right to respect for family life which could not be justified as "necessary in a democratic society". The Court concluded that the decisions taken by the Local Authority were patently decisions in which W should have been closely involved if he was to be afforded the requisite consideration of his views and protection of his interests. It therefore held that there had been a violation of Article 8.
(W-v-UK (1987) 10 EHRR 29)
Those with parental responsibility for a young child have clear rights and responsibilities in respect of their child, including a right to be involved in medical decision making. It is possible, however, that an unmarried father who does not have parental responsibility could use Article 8 to claim a right to be involved in any important decisions about the child's life, including decisions about medical treatment.
Competent minors may be able to invoke their rights under the Act to challenge a decision to provide treatment against their wishes. In England, Wales and Northern Ireland legal cases heard before the implementation of the Human Rights Act made clear that Courts and parents may give consent notwithstanding refusal by a competent person under 18. (This does not appear to the case in Scotland, although the law there cannot be considered to be settled.) It is possible that a young person could use the Convention rights (in Articles 8, 5, 9 or 14) to appeal against a decision to provide treatment against his or her wishes. Information about relevant developments in the law relating to refusal by competent young people will be put on the BMA's website.
Since it has been held that excluding parents from decision making about their children could breach Article 8 then, by analogy, it may be that not involving patients, or the relatives of an incompetent adult, in decision making about medical care, may also breach Article 8. Another facet of Article 8, however, is the individual's right to privacy which complements the common law duty of confidentiality. Thus, although families may have a right to involvement in decision making, this must be respectful of the individual's right to confidentiality. The same dilemma arose before the implementation of the Human Rights Act and is addressed in the BMA's guidance on withdrawing treatment. In discussing the importance of involving those close to the patient in assessing his or her best interests, the guidance states: "In talking to those close to the patient a balance must be sought between preserving confidentiality and obtaining sufficient information to make an informed assessment. Where a patient has, when competent, expressed a specific wish that his or her condition should not be discussed with relatives or friends, this should be respected. This should not, however, prevent the health care team from seeking information from them about the patient's wishes and values." (British Medical Association (1999) Withholding and Withdrawing Life-prolonging Medical Treatment, BMJ Books: London, para 18.3). The same act of balancing between confidentiality and the need to consult those close to the patient is required in order to comply with the Human Rights Act. This assessment should, however, be articulated more clearly in terms of "rights" and both the decision and the process by which the decision was reached should be recorded.
European case law appears to indicate that the treatment decision should be discussed with the patient and, bearing in mind the patient's right to privacy, the patient’s family. Whilst the views of relatives cannot be determinative (since they may conflict with the patients' interests), the doctor must be able to show that these views have been taken fully into account. As has always been the case, medical decisions should reflect the patient's best interests but doctors should be ready to show why they cannot comply with relatives' wishes in some cases. Seeking the views of those close to the patient is already a matter of good practice and is emphasised throughout existing BMA guidance. This process, however, needs to be undertaken in a more formal way in order to be able to demonstrate that this aspect of Article 8 has been complied with.
The right to privacy, under Article 8, closely reflects the common law duty of confidentiality and the professional obligations of health professionals. This does not mean that information must never be disclosed but, as before the Human Rights Act, information should only be disclosed with the patients' consent, where there is a legal obligation to do so or where it is decided that there is an overriding public interest in disclosure. The requirements under the Human Rights Act very closely reflect existing good medical practice and should not represent a major change of practice for health professionals.
MS had been diagnosed with spondylolisthesis at the age of 14. Sixteen years later, in 1981, she slipped at work and injured her back. In 1991 she made a claim for compensation under Sweden's Industrial Injury Insurance Act. Medical evidence was sought by the Social Insurance Office and provided by the clinic that had treated her during that period; this included information about an abortion in 1985 requested because of her back complaint. MS's consent to the release had not been sought, and was not required under the Swedish legislation that required a medical practitioner to provide information requested by the Social Insurance Office that was relevant to a claim. Her application was rejected.
MS appealed to the European Court of Human Rights arguing that the submission of her medical records to the Social Insurance Office constituted an unjustified interference with her Article 8 right to respect for private life. In its judgment the Court reiterated that the protection of personal data, particularly medical data, is of fundamental importance to a person's enjoyment of his or her right to respect for private and family life as guaranteed by Article 8 of the Convention. The Court held that there had been an interference with MS's Article 8 right but went on to find that this was justified under Article 8(2). The interference was in accordance with the law of Sweden, under which consent to disclosure in these circumstances was not required; it had a legitimate aim, of protecting the economic well-being of the country by permitting the allocation of public funds to deserving claimants; and was necessary in a democratic society, since the information was necessary in order to properly assess the claim and the clinic could have incurred civil or criminal liability if it had failed to provide the information on request. The Court therefore held that the interference with MS's Article 8 right had been justified.
(MS-v-Sweden (1997))
Because Article 8 is a qualified right, derogation from its provisions are allowed in some circumstances. All such qualified rights may be restricted ‘in accordance with law’ and the restriction must accord with one of the aims or objectives of the Convention. It is for the public authority that has interfered with the right to identify the aim or objective in question. He or she must also show that any interference with a qualified right is ‘necessary in a democratic society’. This has been interpreted as meaning that interference must correspond to a pressing social need and must be proportionate to the legitimate aim pursued. This requires a similar balancing process as is used to consider whether a breach of confidentiality is justified in the public interest and, similarly, those making the decision must be prepared to give reasons their decision. Such decisions, and the decision-making process, should be recorded.
Article 8 - Summary
Under Article 8 the patient has a right to privacy and also a right to family life. This means that:
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