Money and legal matters 5 - Simple ways to help with welfare matters
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Introduction
Welfare powers of attorney
Medical treatment
Mental Health (Care and Treatment) (Scotland) Act 2003
Taking part in research
Summary
This section is concerned with people who have moderate to severe dementia, and is for carers, relatives or friends who are helping with welfare matters.
Each of us takes many decisions which affect our personal welfare: when to get up, what to wear, what to do during the day. We also take larger decisions, such as what medical treatment to have, what services to use and where to live. Even people with quite severe dementia are often still able to make day-to-day decisions, such as what to eat.
In many cases, people with dementia may also be able to take larger decisions, perhaps with help; for example, deciding to go to a day centre. It is important that people with dementia are enabled to take as many decisions for themselves as possible for as long as they can. Carers and relatives do not have an automatic legal right to take decisions for someone with dementia, though their opinion is very important.
However, as the illness progresses, it becomes harder for people with dementia to take decisions. It may become impossible for someone to understand the consequences of important decisions in order to decide in an informed way.
The Adults with Incapacity Act allows people to choose who they would like to take personal welfare decisions for them if they no longer can, by appointing a welfare power of attorney. The Act also now it makes it possible for doctors to provide treatment if a patient cannot give consent and no-one else has this power on their behalf. It also makes clear rules for research involving people with dementia.
If a decision needs to be made that is not covered by these arrangements, a private individual or the local authority can apply to the court for an intervention order (for a ‘one-off’ decision) or, if the person needs continuing help, appoint a guardian with welfare powers. See What to do if you need more powers for more information.
The best way of deciding what will benefit the person most may be through holding a case conference involving carers, professionals, and as much as possible, the person with dementia and his or her advocate if there is one. Decisions on personal welfare are often a delicate balance between the wishes and rights of the person with dementia and his or her carer, and professional assessments.
The person may have signed a power of attorney earlier in the illness naming someone to look after his or her welfare affairs. This will probably be a power signed after 1 April 2001; before then, powers of attorney did not generally include welfare powers. Being someone’s welfare attorney means that you take decisions, but it does not need to be you who cares for the person.
Unlike continuing powers of attorney, a welfare power of attorney can only be used once the granter has become incapable. All welfare powers of attorney granted after 5 October 2007 have to contain a statement that the granter has considered how he or she would with their incapacity to be determined. The statement does not have to say how it should be determined (although it would be sensible to do so), only that the person has considered it.
Using a welfare power of attorney
In order to operate a welfare power of attorney, the document must be registered with the Public Guardian (see Further help). The fee is currently £60. Welfare powers of attorney can be registered as soon as they are signed, unless the power of attorney specifies that a particular event must happen before it can be registered, such as mental incapacity relating to welfare matters. In this case, you must provide evidence of this (for example medical certificates).
If you are someone’s attorney, you will need a copy of the document issued by the Public Guardian, who will also provide a certificate of registration. To use the power of attorney, you should show these to whoever you are dealing with; for example, a doctor or social worker.
The person who gave you the power of attorney is known as the granter. When the power is registered, the Public Guardian will check that you are willing to act as attorney, and will notify the granter and anyone else specified. All being well, the Public Guardian will then authenticate a copy of the document. The Scottish Executive has produced a code of practice for attorneys which you should use to guide you (see Further reading).
A position of trust
A welfare attorney is in a position of trust and has similar duties to a financial attorney with regard to following the principles of the Act and acting reasonably and in good faith. See A position of trust (chapter four) for an explanation of these duties.
Records
You should keep records of the main decisions you take as welfare attorney, and record events such as periods of illness. You should also keep contact details for the granter, the person’s nearest relative, primary carer, continuing (financial) attorney or guardian if there is one and any significant others (because you have a duty to consult them) and of any joint or substitute welfare attorney. Keep notes of any discussions of the person’s expressed wishes and where relevant papers are kept.
Information and consultation
It is very important that you have as much information as possible about the person with dementia’s current situation and his or her wishes, likes and dislikes, past and present. When the granter becomes incapacitated and you take on your duties as attorney, talk to the person with dementia and to his or her nearest relative and primary carer and anyone else involved, such as the person’s continuing attorney and other relatives and friends involved in his or her care. You will need to consult them about the decisions you take, and it is important that everyone understands your rôle as welfare attorney and how you will carry it out and consult (for example, regular meetings of those involved might be very useful). It is important always to use the principles of the Act to guide the way in which you reach decisions. (See Principles of the Adults with Incapacity Act, chapter one.)
You may need to review the current situation and whether anything needs to be improved. For example, is the person happy, does he or she need more help or services, is his or her living situation suitable and does he or she have access to activities he or she enjoys? The code of practice will give you more guidance on what to consider.
If you need advice on using your welfare powers, your local authority social work department or the Mental Welfare Commission (see Further help) can advise you.
When a power of attorney ends
Welfare powers of attorney can end in the same ways as continuing powers (except for bankruptcy). See When a power of attorney ends, chapter four.
Safeguards
Anyone who has a concern about how a welfare attorney is using, or not using, his or her powers can complain to the local authority social work department, which will investigate. If the social work department does not investigate, or the investigation is not satisfactory, the Mental Welfare Commission (see Further help) can investigate.
If necessary the case can be referred to the sheriff, who may order the local authority to supervise the attorney, or take away some or all of the attorney’s powers. When they supervise an attorney, the local authority will visit the person with dementia and the attorney regularly, usually at least monthly. They will also inspect the attorney’s records.
As long as an adult is capable of understanding what proposed medical treatment involves, his or her consent is necessary. It is important to remember that capacity to give informed consent must be assumed, unless there is evidence to suggest otherwise. The diagnosis of dementia on its own is not enough to conclude that someone is unable to consent. Without consent doctors have no authority to go ahead.
The Adults with Incapacity Act brought new rules for treatment when someone is not able to consent. If a doctor believes that a treatment will benefit a patient with dementia who is incapable of consenting, the doctor should sign a certificate of incapacity which gives him or her authority to treat the person. Before doing so, the doctor should consult with the carer and anyone else closely involved with the person, to get their views on the person’s ability to give consent. He/she is expected to do this where it is ‘reasonable and practicable to do so’. This means that if you are out of the country or have not left a contact telephone number, the doctor can’t be expected to consult you. This consultation, or attempt to consult, should be recorded on the incapacity certificate. When several treatments are required or anticipated in the foreseeable future, the doctor can draw up a Medical Treatment Plan, and again will consult with the carer and anyone else closely involved. The doctor can then also authorise someone else, such as a nurse or other care professional, to treat the person.
Where there is a legally appointed proxy or substitute decision maker, such as a welfare attorney or a welfare guardian with medical decision making powers, the doctor must seek a decision from that person, where it is reasonable and practicable to do so.
Assessment of capacity
Where a doctor is not sure that a patient can give informed consent to treatment, he or she must assess the person’s capacity to consent. Mental capacity is not ‘all or nothing’, and this assessment must be specific to whether the person is capable of making decisions relating to these particular matters. It should take into account his or her ability to understand the options and any risks or benefits, and make and communicate a decision.
Certificate of incapacity
A doctor who wants to treat someone who is not capable of consenting must complete a certificate of incapacity. The doctor must apply the principles of the Act before deciding to do this (see Principles of the Adults with Incapacity Act, chapter one). It will usually be the person’s GP who completes the certificate, but other doctors, such as hospital specialists in charge of a particular course of treatment will also complete certificates.
The Scottish Executive has taken steps to widen the range of people with the authority to grant a certificate of incapacity for the purposes of medical treatment. Under the Smoking, Health & Social Care (Scotland) Act 2005, a range of health professionals other than ‘registered medical practitioners’ have been granted this authority provided they have received relevant training. This list of practitioners includes dentists, nurses and ophthalmic opticians. Practitioners’ certificates only apply to their own kind of treatment; for example dentists can authorise dental treatment but not eye care.
The certificate sets out what treatment is proposed, and should last for the minimum time necessary, with a maximum of a year or, in some circumstances, three years; for example where the condition of the person is unlikely to change or deteriorate.
A person who is assessed as incapable by a doctor has the right to appeal to the sheriff if he or she disagrees. A solicitor can help with this, and the person may get legal aid, depending on his or her financial circumstances.
What treatment is authorised
The doctor’s authority to treat can cover any procedure or treatment designed to safeguard or promote the person’s physical or mental health. This could include simple drug treatments or major surgery; tranquillisers or sleeping tablets; or strictly non-medical treatments such as dental procedures or artificial feeding. The doctor can authorise other doctors, nurses or other professionals such as dentists to carry out the treatment.
Some certificates might be for one particular treatment, for example for an operation, and some could be for a range of treatments, for example for the continuing care of someone with a number of medical conditions. The Scottish Executive Code of Practice (see Further reading) says that it is good practice in this case for the doctor to attach a treatment plan covering the treatments that can be foreseen over the period of the certificate. For example, for one individual this might include treatment for arthritis, diabetes, heart disease and behaviour disturbance associated with dementia, as well as fundamental healthcare procedures such as nutrition, hydration, skin care, pain relief, etc.
The Act prohibits the use of force or detention, unless it is immediately necessary and only for so long as is necessary in the circumstances and this should be recorded in the person’s notes. A certificate will not allow a doctor to authorise certain treatments.
Treatment where there is no substitute decision-maker
If the person does not have a substitute decision-maker (welfare attorney, guardian or intervener) with the relevant powers, the doctor can issue a certificate of incapacity and give the treatment, provided he or she applies the Act’s principles.
Treatment where there is a substitute decision-maker
If the person has a substitute decision-maker (a welfare attorney, guardian or intervener) with the relevant powers, the doctor must ask for the substitute decision-maker’s agreement. The doctor must do this if he or she knows there is such a substitute decision-maker and if it is ‘reasonable and practicable’ to consult him or her. In non-urgent situations, the doctor should try to find out if the person has a substitute decision-maker, for example by asking relatives or checking with the Public Guardian’s register.
If the substitute decision-maker agrees with the proposed treatment, the doctor issues a certificate of incapacity and the treatment can go ahead.
Disagreement with a substitute decision-maker
In most cases, the substitute decision-maker and the doctor will agree. However, if there is a disagreement, and the doctor wants to proceed, he or she must get a second opinion from a doctor of the relevant speciality, from a list held by the Mental Welfare Commission. The second doctor must consult the substitute decision-maker, and if practical, someone else chosen by the substitute decision-maker (this might be a doctor, relative, friend or advocate).
If the second doctor agrees, the treatment can go ahead, unless there is a challenge to the Court of Session.
If the second doctor disagrees, the original doctor, or anyone else with an interest, can apply to the Court of Session for the treatment to go ahead.
In addition, any treatment decision can be challenged by appeal to the sheriff and then, with permission from the sheriff, to the Court of Session, by any person with an interest. An appeal to the Court of Session would require specialist legal advice and could be costly, though legal aid may be available.
Emergency treatment
Treatment without consent can still be given in an emergency without the need for a certificate of incapacity, in order to preserve life or prevent serious deterioration.
Withdrawal and withholding of treatment
The Act says nothing about not treating a patient. The Act is only about having authority to give beneficial treatment. Doctors have General Medical Council and British Medical Association guidance about withholding and withdrawing treatment which they consider unnecessary or not to the benefit of the patient. In such circumstances it would be good practice for the doctor to consult, just as for the Act. Euthanasia is illegal in Scotland.
Mental Health (Care and Treatment) (Scotland) Act 2003
The Mental Health (Care and Treatment) (Scotland) Act 2003 (MHCT) came into effect in October 2005, replacing the Mental Health (Scotland) Act 1984. This section gives basic information about the Act.
The MHCT sets out the rules governing when a person who has a mental disorder (including dementia) can be sent to a psychiatric hospital and detained there even when they do not want to be. It also allows for restrictions to be placed on an individual in the community, such as living at a designated address or attending for treatment.
Most people with dementia will not need to be detained or treated against their will for mental disorder. But sometimes it may be necessary, and this section explains how it works and the safeguards.
Principles of the MHCT
A set of principles underpin the new Act. Anyone who takes any action or makes any decisions about an individual’s care and treatment under the Act has to take account of:
- the present and past wishes and feelings of the individual
- the views of the individual’s named person, carer, guardian or welfare attorney
- the importance of the individual participating as fully as possible
- the importance of providing the maximum benefit to the individual
- the importance of providing appropriate services to the individual
- the needs and circumstance of the individual’s carer.
The Act also describes how these functions must be carried out. They must:
- involve the minimum restriction on the freedom of the patient
- encourage equal opportunities.
Powers under the MHCT
The Act allows for people to be placed on different kinds of compulsory order, according to their particular circumstances. There are three main kinds which might affect some people with dementia:
- emergency detention: allows someone to be detained in hospital for up to 72 hours where hospital admission is required urgently to allow the person's condition to be assessed. It will only take place if recommended by a doctor (usually a GP) and there is no appeal process
- short-term detention: allows someone to be detained in hospital for up to 28 days. It will only take place where it is recommended by a psychiatrist and agreed by a mental health officer (MHO), a specialist social worker. It is possible to appeal this order - the MHO or an advocate should be able to advise on the appeal process.
- compulsory treatment order (CTO): allows someone to be detained in hospital, or imposes restrictions in the community, for up to six months, with the possibility of further extensions. A CTO has to be approved by a Mental Health Tribunal. A mental health officer has to apply to the Tribunal. The application must include two medical recommendations and a plan of care detailing the care and treatment proposed for the patient. The patient, the patient's named person (see Safeguards, below) and the patient's primary carer are entitled to be present and put forward their point of view. There is a review process and the order may not necessarily last the full six months.
The MHCT sets strict conditions about when these powers may be used. These are:
- that the person has a mental disorder (this includes dementia)
- medical treatment is available which could stop their condition getting worse, or help treat some of their symptoms
- if that medical treatment was not provided, there would be a significant risk to the health, safety or welfare of the person or to others
- because of the person's mental disorder, his or her ability to make decisions about medical treatment is significantly impaired
- that the use of compulsory powers is necessary.
When can people be given treatment without their consent under the MHCT?
Depending on which type of compulsory order is being applied, medical treatment for mental disorder may or may not be given without the individual’s consent.
If a person is subject to an emergency detention, then he or she cannot be treated without his or her consent unless the treatment is required urgently, or he or she is being treated under the Adults with Incapacity Act.
Someone who is subject to short-term detention or a compulsory treatment order can be given treatment for mental disorder such as drug treatments, but also nursing, care, psychological interventions, and rehabilitation.
Safeguards
The new Act has a more informal way of hearing cases than the old Mental Health Act. Instead of the Sheriff Court, there is a new Mental Health Tribunal. The Tribunal considers care plans, decides on compulsory treatment orders and carries out reviews. It consists of a panel of three people – a lawyer, a psychiatrist and a general member of the public. The Tribunal hears cases locally.
A person with dementia can choose someone, called a named person, to support him or her in case, in the future, he or she might be detained or compulsorily treated under the MHCT. The named person has the same rights as the person to be notified of, attend and be represented at Tribunal hearings and to information about the person with dementia’s case.
The named person has a different role from a welfare attorney. He or she can only do things which relate to the MHCT, whereas a welfare attorney has broader responsibilities. A welfare attorney takes decisions on behalf of the person with dementia, but a named person can act independently to safeguard the person with dementia’s interests. For example, a named person can apply to the Tribunal for a review of the person's compulsory treatment order with or without his or her approval. The named person has the right to put his or her own view forward, even when the person with dementia has a different view.
The named person need not be the same person as the welfare attorney, (see Welfare power of attorney). Appointing a named person is a simple process that involves no cost. The Scottish Executive has published A Guide to Named Persons, which includes a nomination form. See Further reading.
If the person with dementia has not chosen a named person, and detention or compulsory treatment under the MHCT is being considered, then the primary carer will be the named person (this is the carer who provides most or all of the person's care and support). If there is no primary carer, then the person’s nearest relative will be the named person. The Tribunal can also appoint a named person.
The Mental Welfare Commission has a duty to make sure that treatment and care of people with a mental disorder is legal. The Commission monitors the use of the Act, including the application of the principles. They also inspect records, carry out investigations and provide advice and information. See Further help.
Advocacy
The MHCT gives every person with a mental disorder, including a person with dementia, a right of access to independent advocacy services. NHS Boards and local authorities have to ensure that independent advocacy services are available. This right to advocacy applies to all mental health service users, not just to people who are subject to powers under the Act, but does not extend to carers.
If the person with dementia is going to a tribunal, he or she may also wish to seek legal representation, as well as having an advocate, named person, or welfare attorney. The Law Society of Scotland can provide details of solicitors who have relevant experience. See Further help.
Advance statements
Under the MHCT, people are able to make advance statements, setting out how they would wish to be treated if they become unwell and are subject to compulsory treatment under the MHCT at some point in the future. The Tribunal and anyone responsible for giving treatment under the Act has to take an advance statement into account, although in some circumstances they may override it in the best interests of the person.
An advance statement is simple to complete and costs nothing. The Scottish Executive has published A Guide to Advance Statements. See Further reading. See also Advance statements, advance directives and living wills.
Unlawful detention
A person is a ‘voluntary patient’ in a psychiatric hospital if he or she is not detained under the MHCT. If a voluntary patient is being detained against his or her will, for example in a locked ward, he or she (or someone else such as a welfare attorney, guardian, named person or someone else with an interest in the patient’s welfare) can appeal to the Tribunal under section 291 of the Act. If the Tribunal decides the patient is being unlawfully detained, they can order the managers of the hospital to stop detaining him or her.
Entry, removal and detention powers
If someone is ill-treated or neglected or unable to look after him or herself, he or she could be removed to a ‘place of safety’ under the MHCT if necessary. It is also possible to take someone from a public place to a place of safety where it is in the interests of that person or where it is necessary to protect other people.
The Act allows for a voluntary patient in hospital who wishes to leave hospital to be prevented from leaving and to be detained there by a suitably qualified nurse for two hours to get a medical examination by a doctor.
People with dementia may want to participate in medical or other research, to help in the search for more knowledge about the illness and diagnosis, treatment and prevention. However, their consent must not be taken for granted. Before dementia starts and at the earlier stages of the illness people will be able to take such decisions for themselves, and may be able to consent to research. They may wish to indicate their general willingness to participate in research by making an advance statement to say so or by granting someone a welfare power of attorney with the power to consent to research on their behalf. Later in the illness this will become difficult or impossible. The Adults with Incapacity Act sets out clear rules for what medical, surgical, psychological, nursing or dental research can be done using people who cannot consent.
Under the Act, research involving people unable to consent to take part can only be done if it could not be carried out with people who can consent. The research must be about the cause, diagnosis, care or treatment of the person’s illness. It must be likely to produce a ‘real and substantial benefit’ for the person, or to bring understanding that will help other people with the same condition.
The research must be approved by a special Ethics Committee and must involve no more than minimal foreseeable risk or discomfort. The person should be withdrawn from the research immediately if at any time he or she objects in any way or appears to suffer discomfort.
The research cannot involve anyone who is unwilling to take part. The researchers must get consent from the person’s welfare attorney or guardian, if there is one, or else from the nearest relative. If it is not possible to get this consent it will not be legal for the person with dementia to participate.
Examinations, organ donation and research after death
Decisions about what happens to the body of a person after death are in the hands of that person’s next of kin, who must be consulted by any professional. A person in the early stages of dementia may wish to make an advance statement to be taken into account in deciding what happens after his or her death.
A welfare power of attorney must be registered with the Public Guardian for it to be used to manage the person’s personal welfare.
You must follow the Act’s principles if you are an attorney.
The local authority or Mental Welfare Commission will investigate complaints about welfare attorneys.
A doctor can sign a certificate of incapacity to give him or her authority to treat someone incapable of consenting.
The doctor must first specifically assess the person’s mental capacity to give informed consent to treatment.
The treatment must be to benefit the person.
If there is a substitute decision-maker (such as a welfare attorney, or a guardian or intervener with welfare powers) the doctor should normally consult him or her.
There is a procedure for disagreements between the doctor and the substitute decision-maker.
The Act says nothing about not treating a patient – it is only about having authority to give beneficial treatment.
The Act sets out rules for what research can be done using people who cannot consent.
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