United Kingdom - England
2009: Healthcare and decision-making in dementia
Consent to medical treatment
A patient's ability to consent to treatment must be assessed each time treatment is necessary. Nobody can consent to treatment on behalf of a person who is either temporarily or permanently incapable of doing so (except in accordance with the provisions laid down in the Mental Capacity Act 2005).
For example, under the Mental Capacity Act 2005, if a personal welfare LPA (lasting power of attorney) has been appointed, s/he has the power to make decisions about health and personal welfare including day-to-day care and medical treatment. The personal welfare LPA only takes effect when the donor (the person who appointed the LPA) lacks capacity.
In certain cases, treatment can be given without a person's consent. The justification for doing this is that the treatment is "necessary". The concept of "necessity" does not only apply in emergency situations but can justify routine treatment and even simple care. It is a doctor's common law duty to give treatment to an incapacitated person if this would improve or prevent a deterioration of the patient's health, provided that it is clear that it is in the patient's best interests. The Mental Capacity Act 2005 states how a person’s best interests should be determined. In certain cases, the courts must intervene.
Consent of people who have been detained under the Mental Health Act 2007
People who have been detained according to the provisions of the Mental Health Act 2007 may be given medical treatment for the mental disorder from which they are suffering without their consent. This does not apply to any medical treatment for mental disorder which involves a surgical operation for destroying brain tissue or for destroying the functioning of brain tissue. For such treatment, the patient's consent must be obtained and can be withdrawn at any time. In addition, a registered medical practitioner appointed for this purpose by the Secretary of State and two other persons appointed for the purpose must certify in writing that the patient is capable of understanding the nature, purpose and likely effects of the treatment in question and has consented to it. Furthermore, the registered medical practitioner must certify in writing that as the treatment is likely to alleviate or prevent a deterioration of the patient's conditions, it should be given.
Consent in case of emergency
Consent from the patient is not necessary if the treatment is necessary to save the patient's life, prevent a serious deterioration of his/her health, alleviate serious suffering by the patient or if it represents the minimum interference necessary to prevent the patient from behaving violently or being a danger to him/herself or others. However, if a legally binding advance decision has been made by the patient which directs that they would not want certain interventions it is possible that a doctor would have to abide by its terms (see below for further information on advance decisions).
The right to refuse treatment
Everyone has the right to refuse treatment as long as they have capacity and are not under a section
Consent to the donation of organs and/or human tissue
Under existing common law a bone marrow donation cannot be taken from an adult who is incapable of giving consent until the individual circumstances of the case have been discussed in court.
Where an adult has, whilst alive and competent, consented to brain donation (or appointed a nominated representative in writing in the presence of a witness to act on their behalf in this regard), for the use or storage of tissue for research, then that consent is sufficient for the activity to be lawful. In the case where no such consent exists, and the deceased adult has not specifically refused brain donation for research (either themselves or through a nominated representative appointed in writing to act on their behalf), those close to them (persons in qualifying relationship) can be asked to take this decision. There is a ranking intended to help those seeking consent to know who to approach and in what order if someone is not available in reasonable time after death (spouse/partner, then parent/child, then brother/sister, and so on). The Human Tissue Authority Code of Practice on Consent gives further information on nominated representatives and persons in a qualifying relationship (Alzheimer’s Society, 2009).
Consent to clinical trials
The following section also applies to clinical trials.
Consent to take part in research
All research projects must be approved by the local research ethics committee (LREC). Competent adults should normally consent to both therapeutic and non-therapeutic research. However, the Mental Capacity Act of 2005 contains a section on research in which it is stated that a person who is unable to consent may participate in research projects provided that certain conditions are fulfilled. One condition is that the researcher identifies a carer (or another person interested in the person’s welfare) who can advise as to whether the person with incapacity should take part in the research and what the wishes and feelings of the person with incapacity about participation would be likely to be if they had the necessary capacity to decide. Elsewhere in the Act, it is stated that in determining what is in a person’s best interests, people must consider the person’s past and present wishes and feelings and, in particular, any relevant written statement made when the person had capacity.
With regard to therapeutic and non-therapeutic research, section 31 (2) of the Mental Capacity Act states that to obtain approval from the appropriate body, the proposed research must be connected with (a) an impairing condition affecting the person with incapacity or (b) its treatment. In the terms of the act an “Impairing condition means a condition which is (or may be) attributable to, or which causes or contributes to (or may cause or contribute to), the impairment of, or disturbance in the functioning of, the mind or brain.”
Furthermore, there must be reasonable grounds for believing that research of comparable effectiveness cannot be carried out if the project has to be confined to, or relate only to, persons who have capacity to consent to taking part in it.
Section 31 (5) states that the research must:
(a) have the potential to benefit the person with incapacity without imposing on them a burden that is disproportionate to the potential benefit to them, or
(b) be intended to provide knowledge of the causes or treatment of, or of the care of persons affected by, the same or a similar condition.
If the research falls within paragraph (b) of subsection (5) but not within paragraph (a), there must be reasonable grounds for believing:
(a) that the risk to the person with incapacity from taking part in the project is likely to be negligible, and
(b) that anything done to, or in relation to, the person with incapacity will not -
(i) interfere with their freedom of action or privacy in a significant way, or
(ii) be unduly invasive or restrictive.
Finally, there must be reasonable arrangements in place for ensuring that carers and significant others are consulted and that additional safeguards covering withdrawal from the research are in place.
Advance decisions/living wills
The legal status of advance decisions in England and Wales
Until recently, no-one was legally authorised to consent or refuse particular medical treatment on behalf of an adult lacking capacity and there was no statute directly governing the use of advance decisions in the United Kingdom. Advance decisions had legal status in England and Wales under Common Law but an advance decision concerning a person’s treatment for mental disorder would not be legally binding if the person who made it was subject to compulsory powers under the Mental Health Act 1983. However, an advance decision concerning a physical disorder unrelated to the mental disorder would not be affected by a person’s detention under the Mental Health Act.
In April 2005, the Mental Capacity Bill received Royal Assent and became the Mental Capacity Act 2005. It provides a statutory framework in England and Wales for people who may not be able to make their own decisions due to a mental health problem, a learning disability or an illness such as dementia. Sections 24 to 26 deal with advance decisions to refuse treatment. Other decisions are presumably covered by common law provisions governing consent to treatment.
Conditions surrounding the writing, validity and registering of an advance decision
A person must be over 18 and have sufficient capacity to make an advance directive. This means that a person may lack capacity in one domain (e.g. to make financial decisions), but still be considered capable of writing an advance directive. Capacity is presumed but in case of doubt, it can be established by a court of law. Although advance decisions are usually written documents, they may also be witnessed oral statements, signed printed cards or discussion notes recorded in patients’ medical files. Advance decisions do not need to be witnessed by a solicitor and there is no registration procedure.
In England and Wales, people under the age of 18 can make advance decisions but they are not legally binding.
With specific reference to advance decisions containing decisions to refuse treatment, the Mental Capacity Act 2005 has the following conditions (§25):
(1) An advance decision does not affect the liability which a person may incur for carrying out or continuing a treatment in relation to P (the person who made the advance decision) unless the decision is at the material time (a) valid, and (b) applicable to the treatment.
(2) An advance decision is not valid if P -
(a) has withdrawn the decision at a time when he [sic] had capacity to do so,
(b) has, under a lasting power of attorney created after the advance decision was made, conferred authority on the donee (or, if more than one, any of them) to give or refuse consent to the treatment to which the advance decision relates, or
(c) has done anything else clearly inconsistent with the advance decision remaining his fixed decision.
(3) An advance decision is not applicable to the treatment in question if at the material time P has capacity to give or refuse consent to it.
(4) An advance decision is not applicable to the treatment in question if -
(a) that treatment is not the treatment specified in the advance decision,
(b) any circumstances specified in the advance decision are absent, or
(c) there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them
(5) An advance decision is not applicable to life-sustaining treatment unless -
(a) the decision is verified by a statement by P to the effect that it is to apply to that treatment even if life is at risk, and
(b) the decision and statement comply with subsection (6).
(6) A decision or statement complies with this subsection only if -
(a) it is in writing,
(b) it is signed by P or by another person in P's presence and by P's direction,
(c) the signature is made or acknowledged by P in the presence of a witness,
(d) the witness signs it, or acknowledges his signature, in P's presence.
(7) The existence of any lasting power of attorney other than one of a description mentioned in subsection (2)(b) does not prevent the advance decision from being regarded as valid and applicable.
What an advance decision can cover
Advance decisions can include statements relating to:
- Treatment of medical conditions;
- Treatment of psychiatric conditions;
- Care and welfare decisions;
- Life-supporting treatment;
- Life-saving treatment;
- Appointment of a health care proxy and
but not the refusal of basic care (procedures essential to keep the person comfortable, e.g. warmth, shelter, pain relief and the management of distressing symptoms), the offer of food and drink by mouth or requests for euthanasia or unreasonable treatment.
Obligation to comply with instructions contained in an advance decision
To be considered legally binding, an advance decision must be clear, unambiguous and relevant. Doctors have a legal and ethical obligation to act in the best interests of patients which in addition to clinical factors involves taking into account the past and present wishes of patients. Advance decisions are binding only when they concern the refusal of treatment. General statements or preferences should be taken into account and respected if appropriate but they are not legally binding. Section 4 (6) of the Mental Capacity Act states that in determining what is in a person’s best interests, the person making the determination “must consider, so far as is reasonably ascertainable,
- the person’s past and present wishes and feelings (and in particular, any relevant written statement made by him [sic] when he had the capacity)
- the beliefs and values that would be likely to influence his decision if he had capacity, and
- the other factors that he would be likely to consider were he able to do so.”
In all cases, a contemporaneous decision by a competent person overrides any decision made in an advance decision. As competence is not an all-or-none affair, it should also be possible to challenge or express disagreement with a particular statement recorded in an advance decision provided that the person has sufficient capacity with regard to that decision. Doctors should comply with advance decisions even if they go against their personal beliefs or values. They may arrange for a colleague to take over a patient’s treatment but if this is not possible, they must comply with a valid advance decision.
Concerning advance decisions to refuse treatment, the Mental Capacity Act (section 26, §5) states “Nothing in an apparent advance decision stops a person – (a) providing life-sustaining treatment , or (b) doing any act he [sic] reasonably believes to be necessary to prevent a serious deterioration in P’s condition, while a decision as respects any relevant issue is sought from the court.”
Amending, renewing and cancelling advance decisions
An advance decision can be amended or cancelled at any time provided that a person has the capacity to do so. A withdrawal, partial withdrawal or alteration of an advance decision to refuse treatment need not be in writing (Mental Capacity Act, Section 24, §§4-5).
Access to information/diagnosis
Access to medical files
The Access to Health Records Act of 1990, which came into force in November 1991, deals with a person's right to consult his/her own medical records. A health record is understood to mean a record containing information relating to a person's physical or mental health which has been made by or on behalf of a health professional who is responsible for the care of that person.
An application for access can be made by the patient or a person who has been authorised in writing to make an application on his/her behalf. In the case of an incapacitated person, anybody who has been appointed by the court to manage his/her affairs can apply for access to the records.
Finally, there is the Data Protection Act of 1998 which stipulates that a person has the right to have access to any electronically stored information kept on him/her by another person. If the information is unintelligible to the person requesting access, the keeper of the information is obliged to explain it in a way that he/she can understand. The data controller cannot release any information if it would involve revealing information about another person who has not consented to its disclosure. The person requesting access to information must make the request in writing. Therefore, provided that a person is able to do this and understands the implications of the request, he/she should be granted the desired access.
However, there are separate provisions concerning personal data held by health professionals on the physical or mental health of a person. These are contained in the Data Protection (Subject Access Modification) (Health) Order 1987 which covers information held by or on behalf of health professionals. According to this order, access may be denied if the information is considered to be likely to cause serious harm to the physical or mental health of the data subject or if disclosure would involve revealing personal information about another person.
Independent Mental Capacity Advocates
Section 35 of the Mental Capacity Act covers the appointment of “independent mental capacity advocates” who are responsible for supporting and representing people lacking capacity who have no one else to speak for them when decisions need to be taken about serious medical treatment and long-term residential care. They have the authority to interview the person who lacks capacity in private and, at all reasonable times, to examine and take copies of the person’s health records. Independent mental capacity advocates may be required to:
- Provide support so that the person who lacks capacity can participate as fully as possible in any relevant decision;
- Obtain and evaluate relevant information;
- Ascertain what the wishes and feelings of the person who lacks capacity would be likely to be, and the beliefs and values that would be likely to influence them, if they had capacity;
- Ascertain what alternative courses of actions are available in relation to the person who lacks capacity;
- Obtain a further medical opinion where treatment is proposed and the advocate thinks that one should be obtained.
They can also challenge or provide assistance for the purpose of challenging any relevant decision.
The doctor’s right to withhold information
Under the Access to Health Records Act of 1990access to all or part of the information contained in the record may be refused if the holder of the record is of the opinion that such information is likely to cause serious harm to the physical or mental health of the patient or to any other individual.
Confidentiality/disclosure of information to other people
The Access to Medical Reports Act of 1988 deals with the disclosure of medical information about an individual to employers or insurance companies. According to this act, a person cannot apply to a medical practitioner for a medical report about someone else for employment or insurance purposes unless he/she has notified that person and received the consent of that person. If the person concerned consents, he/she may demand access to the report.
Doctors are ethically bound to respect the principle of confidentiality with regard to their patients. This is laid down in the Hippocratic Oath which states:
"Whatsoever things I see or hear concerning the life of men, in my attendance on the sick or even apart therefrom which ought not to be noised abroad, I will keep silence thereon, counting such things to be as sacred secrets."
The principle of confidentiality is also recognised in common law. However, the obligation is not absolute in that in certain circumstances a doctor may be justified in disclosing information in the public interest or as a result of having been released from the obligation by the patient. A doctor may also be obliged to reveal personal records containing information of a patient's physical or mental health under The Police and Criminal Evidence Act 1984.
There is no statute which specifically and solely deals with the issue of confidentiality. However, in a statement issued in 1995 by the General Medical Council, it is stipulated that doctors may disclose relevant information to an appropriate person or authority if the patient is mentally incapacitated, he/she would not consent to the appropriate person being involved in the consultation and the doctor considers that disclosure would be in the patient's best interests. It is further stipulated that if seeking consent to disclose information would be damaging to the patient but that disclosure would be in his/her best interests, the doctor may disclose the information without the patient's consent. This could be applicable in certain cases where disclosure of the diagnosis would be damaging to the patient but necessary for relatives to ensure the appropriate care.
Since the implementation of the Mental Capacity Act 2005, Lasting Power of Attorney for Personal Welfare and Deputies for Personal Welfare have been introduced in law. An attorney or deputy in this role could realistically expect that their authority included having access to medical and care records. Any refusal of access ought to be raised with the Court of Protection.
End-of-life issues and care
The principle of double effect
It is legal for doctors to administer increased doses of analgesics to a patient in order to ease his/her suffering, even if this eventually leads to the patient's death. This is known as the principal of double effect and was legalised in England following the trial of Bodkin Adams in 1957.
There is no legislation which specifically deals with euthanasia or assisted suicide. Euthanasia and assisted suicide are illegal in England.
Suicide is no longer a crime in England. However, abetting, counselling or procuring the suicide or attempted suicide of another is a crime according to the Suicide Act 1961 (England and Wales). Consequently, assisted suicide is a crime and carries a jail term of up to 14 years. In September 2009, the director of public prosecutions published guidance which clarified the law on assisted suicide in England and Wales amidst uncertainty as to whether people would be prosecuted for helping someone to travel abroad to commit suicide. Attention will be paid to factors such as whether the person was deemed competent, had a clear and settled wish to make such a decision, was over 18 and did not have mental disorder but also whether the other person stood to gain financially or was acting out of compassion. No guarantees are offered against prosecution (BBC, 2009).
If a person who is of sound mind and capable of discernment illegally kills another or causes serious bodily harm leading to death within a year and a day, he/she may be found guilty of murder. The person's reasons cannot justify the action. However, according to the Homicide Act of 1957, the charge could be reduced to manslaughter if the action resulted from provocation, diminished responsibility or a suicide pact.
Alzheimer’s Society (2009), Brain tissue donations, http://www.alzheimers.co.uk/ accessed 13/7/2009
Voluntary Euthanasia Society (1997), Current legislation (fact sheet)
BBC (2009), Assisted suicide law “clarified”, http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/8270320.stm
 Law Commission Mental Incapacity, Report N° 231, paragraph 6.29 onwards.
 Information sheet "Current Legislation" by The Voluntary Euthanasia Society (November 1997)
Last Updated: Wednesday 27 April 2011