United Kingdom - Scotland
Healthcare and decision-making in dementia
Consent to medical treatment
Common law rules govern access to information from doctors and consent to treatment provided that a person has sufficient capacity to consent. This may still be the case for many people with dementia.
A person who is unable to make a decision relating to medical treatment due to a mental disorder (the definition of which includes dementia) is classed as incapable in Scotland. Incapacity is determined on a case by case basis as a patient might be able to make a decision for one form of treatment but not another. Under mental health laws in Scotland all decisions made on behalf of a person with impaired capacity must implement the following principles:
- Benefit the person
- Restrict the person’s freedom as little as possible whilst still achieving the desired benefit
- Take account of the person’s past and present wishes (providing every assistance to aid communicate as appropriate to the needs of the person);
- Take account (as far as reasonable and practical) the views of relevant others
- Encourage the person to use existing abilities and where possible develop new skills
The Mental Health (Care and Treatment) (Scotland) Act 2003 covers only treatment for mental disorder (which might include the treatment of symptoms associated with dementia and also the treatment of concomitant mental disorders, not secondary to the dementia). The Adults with Incapacity (Scotland) Act 2000 can cover any form of treatment in circumstances where the 2003 Act does not apply if the person is unable to take the decision in question. There are special provisions under the 2000 and 2003 Acts for treatments for the reduction of sexual drive. In both Acts. the specific provisions on medication should be read along with the Principles of the Acts. The Codes of Practice give important guidance on many aspects of drug treatment.
Welfare Guardians and welfare attorneys who have medical decision-making powers can consent on the patient’s behalf but not to certain medical treatments covered under the Mental Health Act or which Scottish Ministers may list. A person who has been granted an intervention order may also be authorised to make a specific decision about medical treatment on behalf of a person with incapacity.
Under section 47 of the Adults with Incapacity (Scotland) Act 2000, a medical practitioner who is primarily responsible for the medical treatment of an adult and considers him/her incapable in relation to a decision about medical treatment, is authorised to carry out the treatment required. He/she must issue a certificate to the effect that an assessment of capacity has been carried out and the nearest relative and primary carer has been consulted (as far as practical). This certificate gives him/her the right to do what is reasonable in the circumstances, in relation to the medical treatment in question, to safeguard or promote the physical or mental health of the patient. Where the patient has several medical conditions the doctor can draw up a medical treatment plan. This will identify the necessary treatments which the person is capable and incapable of consenting to. The patient’s health care and capacity to consent should be reviewed regularly but it a certificate can authorise treatment for up to three years where the patient’s capacity is unlikely to change. The certificate can also be issued by a dental practitioner, an ophthalmic optician, a registered nurse or any person described as suitable by the Scottish Ministers. These categories of practitioner are only authorised to assess capacity and treat in relation to his or her own specialism.
According to Patrick (2006), consent or refusal of treatment by a person with dementia should be respected so long as he/she has the capacity to consent to medical treatment. Once this is no longer the case, a welfare attorney or guardian may be able to consent to treatment (or refuse it) on his/her behalf (except where a refusal to treat would be life-threatening).
The Adults with Incapacity Act contains special provisions for situations where there is disagreement between the person who issued a certificate and the person/s authorised to consent on behalf of the person with incapacity. In fact it allows anyone with an interest in the patient to challenge a decision made by either the doctor or the proxy, and request a second opinion.
A new booklet ‘Caring and Consent – your right to be involved in decisions about the health care of the adult you care for’ (2009) NHS Scotland, sets out the rights of carers to be consulted about treatment plans. However it is only legally appointed proxies with appropriate powers who have a right to make any final decisions. This booklet is available in several languages including Spanish, French, Polish and Croatian.
Consent by people who have been involuntarily detained
Part 16 of the Mental Health (Care and Treatment) (Scotland) Act 2003 deals with the issue of consent to treatment in the case of people who are subject to various compulsory measures. These compulsory measures cover people who are subject to short-term detention, compulsory treatment orders and interim compulsory treatment orders, as well as people who are subject to compulsory measures under the Criminal Procedure (Scotland) Act 1995. They do not apply in the case of emergency detention certificates (Patrick, 2006).
Certain treatments, specified by the Scottish Ministers, can only be given if the person consents or if authorisation is obtained from an independent psychiatrist. These include drug treatment after the first 2 months, drugs to reduce sex drive and artificial nutrition (but not forcible feeding). Special rules exist for electro-convulsive therapy (ECT).
If the patient has the capacity to consent to treatment but refuses to take it, ECT cannot be given even in case of emergency. This also applies to transcranial magnetic stimulation and vagus nerve stimulation (Patrick, 2006).
For neurosurgery and deep brain stimulation treatments, the consent of the patient as well as second opinions recommending the treatment are needed (even for patients who are not subject to compulsory measures. The Scottish Ministers have the authority to include further treatments to the list of those requiring second opinions.
The provisions concerning consent with or without a second opinion do not apply to any treatment:
- which is immediately necessary to save a patient's live; or
- which (not being irreversible) is immediately necessary to prevent a serious deterioration of his/her condition; or
- which (not being irreversible or hazardous) is immediately necessary to alleviate serious suffering by the patient; or
- which (not being irreversible or hazardous) is immediately necessary and represents the minimum interference necessary to prevent the patient from behaving violently or being a danger to him/herself or to others.
Consent in case of emergency
Under common law, a doctor can treat a patient in an emergency without having obtained prior consent provided he/she considers the treatment to be in the patient’s best interests. This is only the case if the patient is unable to consent and provided that there was not a guardian, welfare attorney or person with the necessary authorisation under an intervention order who could have provided consent. The clinical judgement of the doctor can over-rule an advance directive.
For treatments requiring special safeguards such as a second medical opinion or court approval, the Adults with Incapacity Act (Scotland) Act 2000 (s47(2)) would apply. In such cases, doctors can provide the necessary treatment to save the patient’s life or to protect him/her from a serious deterioration of his/her condition. However, the Mental Welfare Commission must be notified by the doctor within 7 days of providing the treatment. If, following emergency treatment in accordance with common law provisions, further treatment is needed and the patient remains unable to consent, the doctor should then take the necessary steps under the Adults with Incapacity (Scotland) Act 2000 (Patrick, 2006).
The right to refuse treatment
A person may refuse treatment provided that he/she has the legal capacity to do so, even if he/she is likely to die without the treatment. A patient who refuses treatment may do so on irrational grounds and does not have to justify the refusal. If a doctor considers that a patient who is refusing treatment lacks legal capacity, he/she may proceed in accordance with the provisions of the Adults with Incapacity (Scotland) Act 2000 (described earlier) (Patrick, 2006).
The right to withdraw consent
In the case of people with incapacity who have been involuntarily detained and for treatment which also necessitates the patient’s consent, if a patient has consented to treatment or to a treatment plan, consent can be withdrawn at any stage of the treatment (Mental Health (Care and Treatment) (Scotland) Act 2003.
Consent to non-conventional treatment
According to Patrick (2006), some complementary therapies (such as acupuncture and homeopathy) are now offered by some hospitals. Presumably, the consent procedure would be the same as for other more conventional treatments. In June 2000, the Department of Health published a booklet entitled “complementary measures; for information in primary care groups” in which they proposed key constituents of a model contract for a non-medically qualified practitioner providing services in the National Health Service:
“Patients must be fully informed about the nature of the therapy, including any side effects, and have realistic expectations of its benefits. The informed consent of the patient or, in the case of young children, of the parent or guardian, must be gained and documented.”
However, many non-conventional therapies and treatments are offered privately. Some practitioners are qualified and members of recognised bodies; some are not. It is not clear what the right to consent would be in such cases.
Consent to the donation of organs and/or human tissue
The Human Tissue (Scotland) Act 2006 covers organ donation for transplantation, research, education/training or audit. Article 6 states that a person may make a written or verbal statement that his/her body parts may be removed after death and used for one or more of the afore-mentioned reasons. If no such statement has been made, the nearest relative of the deceased person may consent to the removal and use of a body part on his/her behalf. However, the relative is not authorized to consent to this if he/she is aware that the deceased was unwilling to donate body parts. The fact that the deceased did not consent to the removal and use of body parts is not interpreted as meaning that he/she was against it.
Article 5 states that it is an offence to remove an organ, part of an organ or tissue for the purposes of transplantation from a living child or a living adult with incapacity.
Consent to research
Section 51 of the Adults with Incapacity (Scotland) Act 2000 deals with consent to research and clinical trials.
Surgical, medical, nursing, dental or psychological research cannot be carried out on people who lack the capacity to consent to such research unless research of a similar nature could not be carried out on an adult who is able to consent to such research AND provided that the purpose of the research is to obtain knowledge of:
- the causes, diagnosis, treatment or care of the adult’s incapacity; OR
- the effects of any treatment or care given during his/her incapacity
In addition, the following conditions must be fulfilled:
- The research must be likely to produce real and direct benefit to the adult
- The adult does not indicate unwillingness to participate in the research
- The research has been approved by the Ethics Committee.
- The research entails no foreseeable risk, or only minimal foreseeable risk to the adult
- And consent has been obtained from any suitably authorised guardian or welfare attorney, or failing that, from the adult’s nearest relative.
Research which is unlikely to produce real and direct benefits can nevertheless be carried out if it would be contribute towards a significant improvement in the scientific understanding of the adult’s incapacity which would be likely to lead to a direct and real benefit to the adult or to other people with the same incapacity. The above conditions would nevertheless have to be fulfilled.
Consent to clinical trials
Approval by the Ethics Committee is not necessary for the clinical trials of medicinal products provided that a favourable opinion has already been given by an ethics committee (other than the Ethics Committee) in accordance with regulation 15 of the Medicines for Human Use (Clinical Trials) Regulations 2004.
The consent of the guardian, welfare attorney or nearest relative is not needed if it was not practicable to contact such person before the decision to participate had to be taken AND consent was obtained from a person not involved in the clinical trial other than the main treating doctor or someone nominated b the relevant health care provider.
The consent of the guardian, welfare attorney or nearest relative is also not needed if participation in the clinical trial is considered a matter of urgency for the person with incapacity.
Advance directives and healthcare proxies
The legal status of advance directives in Scotland
There is no statute directly governing the use of advance directives in Scotland. The Adults with Incapacity (Scotland) Act 2000 is the main legislation on proxy decision making for adults with incapacity in Scotland but it makes no reference to advance directives. It covers financial decisions (except wills) and welfare decisions, which include all health care, except compulsory treatment for mental disorder under the 2003 Mental Health Act. However, the Principles of the Act require the past and present wishes of the adult to be taken into account, and there must be justifiable reason for going against these.
The Mental Health (Care and Treatment) (Scotland) Act 2003 recognises advance directives in the case of people who are subject to compulsory orders (Patrick, 2006). An advance directive can be overturned by clinical judgement.
Conditions surrounding the writing, validity and registering of an advance directive
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 directives are usually written documents, they may also be witnessed oral statements, signed printed cards or discussion notes recorded in patients’ medical files.
In Scotland, to appoint a health care proxy (i.e. a welfare attorney), a person must be aged 16 or over and must obtain a certificate from a solicitor confirming that they understand what is involved and are not acting under undue influence.
What an advance directive can cover
Advance directives can include decisions 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.
According to the Adults with Incapacity (Scotland) Act 2000, health care proxies (welfare attorneys or guardians) must be consulted about treatment decisions unless it is impracticable to do so (for example, it is impossible to contact the proxy).
Obligation to comply with instructions contained in an advance directive
Advance directives are not legally binding in Scotland. However a written advance directive would have to be considered if it is clear, unambiguous and reasonably proximate. 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. General statements or preferences should be taken into account and respected if appropriate but they are not legally binding.
In all cases, a contemporaneous decision by a competent person overrides any decision made in an advance directive. As competence is not an all-or-none affair, it should also be possible to challenge or express disagreement with a particular decision recorded in an advance directive provided that the person has sufficient capacity with regard to that decision.
Section 1 of the Adults with Incapacity (Scotland) Act 2000 provides five principles, which must be followed by those who intervene in the finances or welfare of an adult with incapacity under the terms of the Act. The third Principle requires that anyone intervening must take into account the ‘past and present wishes and feelings’ of the adult as far as these are ascertainable. The final decision on what action to take rests with the person given responsibility for the intervention under the Act. This may be an attorney appointed by the adult when capable, a doctor authorised to give medical treatment, a researcher, an intervener or a guardian.
Doctors should comply with advance directives 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 directive. (NOTE - This is a very grey area – the provision under Part 5 of the Adults with Incapacity Act for dealing with disputes over medical treatment would come into effect.)
Amending, renewing and cancelling advance directives
An advance directive can be amended or cancelled at any time provided that a person has the capacity to do so.
A person may grant a power of attorney relating to his/her personal welfare in accordance with the provisions of Part 2 of the Adults with Incapacity (Scotland) Act 2000. He/she can appoint one or more persons as welfare and or financial (continuing) attorney. Personal welfare does not automatically include health care decisions. Powers to make health care decisions must be specified in the document.
For a welfare power of attorney to be valid, certain conditions must be fulfilled, such as:
- It must be made in writing by the granter
- It must be clearly stated the granter wishes it to be a welfare power and to include the power to make health care decisions.
- It must be clearly stated that consideration has been given to how incapacity relating to the decisions covered by the welfare power should be determined. A clause can be included that sets out the specific circumstances. Otherwise it can be left to the attorney to decide when capacity has been lost.
- A certificate in the prescribed form must be obtained from a solicitor or other authorised person.
The solicitor (or other authorised person) must have interviewed the granter immediately prior to the granter signing the document. He/she must be satisfied, based on his/her own experience or as a result of information provided by named individuals, that the granter understood the nature and extent of the measure. He/she must also state that he/she has no reason to believe that the granter was acting under undue influence or that any other factor vitiates the granting of the power.
A welfare power of attorney can only be granted to an individual (not a person acting in an official capacity such as officer of a local authority, or a firm of solicitors) and does not come into force until the granter has lost the capacity for decisions related to matters contained in the welfare power of attorney. It does not end if the granter or the attorney goes bankrupt.
The attorney only has authority to act once the power of attorney has been registered. A welfare attorney should not be obliged to do anything which is unduly burdensome or expensive (in comparison to its value or utility) even if it is within the scope of his/her powers. Attorneys must keep records of their activities on behalf of the granter and act in accordance with the principles.
The granter of a welfare power of attorney may revoke it after it has been registered subject to certain conditions being fulfilled i.e. the revocation must be in writing and incorporate a certificate in due form by a solicitor or other authorised person who certifies that he/she has interviewed the person and that the person understood the effect of the revocation and is making the decision freely.
The attorney may resign after the document conferring power has been registered. If the granter and the attorney are married the power of attorney would come to an end if they separate or divorce or if the marriage is annulled. In the case of civil partnerships, the same would apply in the case of separation, dissolution or nullity of the partnership.
Access to information/diagnosis
The right to be informed
Receiving information is necessary if people are to give informed consent and make advance care plans by drawing up a power of attorney or advance directive. However, the amount and type of information to be given is not clearly stated in a law. Provisions relating to the right to be informed are taken from case law. For example, a judge in the House of Lords stated in the context of a particular case that only fraud or misrepresentation as to the nature of treatment would invalidate consent (i.e. not inadequate information) (Patrick, 2006). On the other hand, failure to provide adequate information would represent a breach of the duty of care and could lead to a negligence claim against the doctor.
Patrick (2006) describes courts rulings which suggest a general move away from the rather paternalistic approach to providing information based on the clinical judgement of the doctor (sometimes referred to as the “reasonable doctor” test) towards one in which it is considered that information about a significant risk should be provided if it would affect the judgement of a “reasonable person”. Nevertheless, the onus is still on the doctor to assess how much and what kind of information it would be appropriate to give each patient based on the receptiveness of each patient.
It is stated in the Mental Health (Care and Treatment) Act Code of Practice (vol, 1, para 10.02) that people under compulsory orders should be informed about the aims and effects of the treatments but at the same time, Patrick (2006) points out that doctors may nevertheless in some cases consider it unhelpful to provide such information (e.g. about possible side effects of treatment).
The Disability Rights Commission, in its guide to Good Medical Practice under the Disability Discrimination Act (1995), states that doctors should share with patients in a way they can understand the information they want and need to know about their condition, its likely progression and treatment options available to them, including associated risks and uncertainties. Doctors working in the public sector have additional responsibility under the ‘The Disability Equality Duty’ (December 2006), which means that any public body needs to actively look at ways of ensuring that disabled people are treated equally.
The General Medical Council has produced a number of good practice guides which relate to circumstances where the patient is unable to give informed consent, including the issue of confidentiality.
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. However, information is not available on those records which predate the Act.
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 with powers to access personal records, and with specific health care powers, can apply for access to the records. Access 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. A request can be made to the Court to amend the records.
The Data Protection Act of 1998 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.
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.
The right to designate another person to be informed on one’s behalf
Under the Mental Health (Care and Treatment) (Scotland) Act 2003 the patient has a right to designate a ‘named person’ to receive information.
The doctor’s right to withhold information
A doctor may withhold information from a patient if he/she believes that such information would be stressful or harmful to the patient’s physical or mental health (Sidaway v Royal Bethlem Hospital, 1984) but he/she must have a good reason and be able to justify the decision to withhold information (Patrick, 2006).
The patient’s right to refuse information
Under common law, a patient has a right to refuse information about his/her medical condition unless the lack of disclosure is deemed to be a public health risk.
Confidentiality/disclosure of information to other people
The Confidentiality of Personal Health Information: Code of Practice (1990) of the Scottish Home and Health Department states that personal information is confidential and should only be supplied to those people who are directly involved in the provision of health care, social care or aftercare of a patient. This has been updated in the Confidentiality Guidance published by the (General Medical Council (2009) and in the NHS Scotland guidance ‘Caring and Consent’ (referred to earlier).
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.
As a general rule, doctors and healthcare professionals must keep information about their patients confidential, even after the death of the latter. However, in the case of adult patients lacking capacity, whilst this rule still applies, there are a few exceptions. For example, a person may have been appointed who has the right to access information such as a welfare attorney or guardian. Similarly, as doctors are expected, where appropriate, to consult relatives and carers (Adults with Incapacity (Scotland) Act 2000, s 1 (4)), this implies sharing certain information about the patient with them. The doctor should nevertheless obtain the consent of the person lacking capacity to do this but if the person refuses this, the doctor should reveal the information if it is in the patient’s best interests and inform him/her that he/she has done this (Patrick, 2006).
Doctors may reveal information that should normally be considered confidential if it is necessary to do so in order to prevent a serious risk to the health or safety of the person concerned or of other people, to prevent a serious crime or in the context of investigations into a serious crime (NHS Code, paragraph 7.5) (Patrick, 2006).
End-of-life care and issues
The Scottish Government (2008) has introduced a policy which recognises that people with long-term conditions, including dementia should receive specialist palliative care towards the end of life.
Special leave for carers in paid employment (to care for terminally ill person)
Carers have a right to request special care leave although granting this request is at the discretion of the employer.
Euthanasia and assisted suicide are considered as crimes. If someone brings about the death of another person, he/she could be prosecuted in a number of ways, e.g. for the reckless endangerment of life.
Non-assistance to a person in danger
Where a public body has been informed that a vulnerable person may be at risk of harm, that body has a duty of care to act. This measure which allows an emergency intervention was introduced in the Adult Support and Protection (Scotland) Act 2007
Murder, poisoning and murder at the request of the victim
This is a criminal act.
Adult Support and Protection (Scotland) Act 2007
Adults with Incapacity (Scotland) Act 2000: http://www.scotland.gov.uk/topics/justice/civil/awi
Alzheimer Scotland (2009), Dementia: Money and Legal Matters. A Guide , Alzheimer Scotland
Department of Health (2000), Complementary medicine: information pack for primary care groups ; Accessed on line on 14 October 2009:
General Medical Council (2009), Confidentiality Guidance
General Medical Council (2008), Consent: patients and doctors making decisions together ,
Mental Health (Care and Treatment) (Scotland) Act 2003:
NHS Scotland (2009), Caring and Consent – your right to be involved in discussions about the health care of the adult you care for , http://www.hris.org.uk
Patrick, H (2006), Mental health, incapacity and the law in Scotland , Tottel Publishing
Scottish Government (2008) Living and Dying Well: a national action plan for palliative care . http://scotland.gov.uk/Publications/2008/10/01091608/2
Last Updated: mercredi 27 avril 2011