Booklet  Consent to Medical Treatment

Introduction

 
There may be many reasons why a person with a learning disability needs treatment or an operation on their eyes or ears.

We take it for granted that access to care or treatment proceeds without difficulty. We expect guidance on consent should be in place to enable people to get high quality care. We expect staff in health care settings to know about consent and not to delay or prevent people getting the treatment they need.

We know that it is in an individual’s best interests to go for a sight test at least every two years or go for a hearing check whenever problems become apparent. Many people with learning disabilities proceed with these appointments, supported by staff or family carers. These appointments happen without the issue of ‘consent’ ever being discussed. But concern becomes apparent whenever surgery or invasive procedures are necessary.

Many supporters feel anxious about ‘consent’. They may worry that the person is unable to make important decisions or that the person may make a decision that seems unreasonable.

This factsheet aims to explain what ‘consent’ is and how discussion about ‘best interests’ might proceed.

What does the Law say?

The Mental Capacity Act (2005), which came into effect in 2007, is designed to help people make their own decisions whenever possible. It also aims to enable individuals who are unable to make certain decisions to receive care or intervention with their ‘best interests’ applied.

An important principle of the Mental Capacity Act (2005) is the duty to make sure that each individual receives support to make their own decisions based on information that is accessible for that person. The Act also clarifies how best interests are applied to people who are unable to make a specific decision.

‘Capacity’ relates to each individual’s own capability in relation to making a decision. We cannot assume that an individual cannot make a decision because that person has a disability, or because of that person’s age - whether he/she is 16 or 106. A general assumption about an individual’s capacity to make a decision cannot be made. Each decision needs to be considered separately at the time.

The law has also changed with the introduction of the Deprivation of Liberty Safeguards (DOLS) in relation to the possible authorised deprivation of liberty which is not covered through Mental Health Act (1983) provision for people over 18 years of age. The DOLS process follows on from the Mental Capacity Act (2005) and the amendments made through the Mental Health Act of 2007.

Background

There has been a move away from a paternalistic approach to consent with a move towards a greater emphasis on the rights of the individual to give consent for him/herself (Dimond 2005). We recognise that the best person to make a decision, whenever possible, is the person with a learning disability, and imposed care or treatment does not respect the rights of the individual. Each person has Human Rights under the Human Rights Act (UK Parliament 1998).

Why is consent important?

Consent is important because we want all people with learning disabilities to be treated in a respectful manner, addressing each individual’s needs. We also recognise that consent is vital to ensure that any intervention is humane. Consent and the right to refuse treatments or interventions should be each individual’s right and this right should be respected. Consent is necessary in order for all interventions to be considered, with both positive and negative aspects of any intervention discussed and understood. Individual rights need to be respected in line with the Human Rights Act (1998) and the Disability Discrimination Act (1995).

Best interests

If any adult lacks the capacity to make a decision, then any decision made must be based on the best interests of the individual, involving the individual as far as this is possible (DOH 2002). Best Interests means in the interests of the patient, i.e. the right treatment at the right time in order to maintain or improve health or wellbeing.

Help at a glance - definitions and more detailed information follow later in this factsheet Issue

What is consent?

Consent is the ability to give permission to a treatment or procedure that the person understands. 

What happens if a person can consent to treatment?

 
Treatment should go ahead without delay with the person’s best interests at heart.

What if a person can’t consent to treatment?

People who cannot consent to treatment still have the right to expect the right treatment, given at the right time in the most humane and least restrictive ways possible. Treatment can go ahead in the person’s best interests.

What about Deprivation of Liberty Safeguards (DOLS)

Deprivation of Liberty safeguards (DOLS) were introduced into the Mental Capacity Act 2005 through the Mental Health Act 2007. The DOLS safeguards apply to anyone aged 18 and over who suffers from a mental disorder or disability of the mind – such as dementia or a profound learning disability who lacks the capacity to give informed consent to the care and or treatment and for whom deprivation of liberty is considered after an independent assessment to be necessary in their best interests to protect them from harm. The safeguards cover patients in hospitals, and people in care homes registered under the Care Standards Act 2000, whether placed under public or private arrangements. The safeguards are designed to protect the interests of an extremely vulnerable group of people and to ensure people can be given the care they need in the least restrictive way . For understanding of the DOLS process please see the reference list and sources of help and advice.

What is a Best Interest Assessors (BIA) role under DOLS?

A person whos role under the Mental Capacity Act (2005) DOLS process is to ensure that any deprivation of liberty is within defined limits reflecting best interests of the patient? please see the reference list and sources of help and advice.

What is an IMCA?

An Independent Mental Capacity Advocate (IMCA) can represent and support a person who lacks capacity and give views to a decision maker – such as a hospital doctor or consultant or nurse or audiologist or other professional who has recommended the treatment or intervention.

When do we call an IMCA?

If you are in any doubt or if you have concerns, the IMCA may be able to offer general advice or support. IMCA services work slightly differently in different areas but they all support the Mental Capacity Act, 2005.

Who is responsible for seeking consent?

The person offering the treatment (such as a doctor). However carers, IMCAs, advocates, and those who know the individual can contribute to the process in support of best interests. 

What is Best Interests?

 
Doing the right thing for the right person at the right time.

What is a best interests meeting?

A meeting which is held to identify what should be done in the person’s best interests. The best interests meeting can enable greater use of information to support best practice.

Who arranges a best interests meeting?

The person proposing the treatment or the meeting can be called by an advocate or IMCA or carer/relative.

Who makes the decision on any treatment?

The individual who may need the treatment should make the decision whenever possible. In cases where the person can’t consent, the doctor or clinician providing the treatment and multi-disciplinary team can act in the person’s best interests to reach a decision.

What happens if a family carer or supporter disagrees with a proposed treatment or the multi-disciplinary team cannot agree?

The IMCA should always be involved and if necessary legal advice or support will be needed to support treatment in line with Best Interests.

If a person is being discriminated against what can I do?

It is illegal to discriminate on grounds of ability or disability. The IMCA should be consulted. The PALS (Patient Advice and Liaison Services) provide information, advice and support to help patients, families and their carers in relation to medical/nursing treatments. The PALS service can be contacted through the GP practice or hospital and a complaint can be made. The Police can also be contacted in cases of discrimination.

What forms are filled in for any treatment?

The clinician carrying out the treatment will have the correct forms which may slightly differ in different areas. It is also worth keeping a record of how decisions are made in the pursuit of best interests. IMCA, advocacy and multi-disciplinary team members will also have their own documents to complete.

What can an advocate do?

Advise, clarify and enable a person with a learning disability to make a decision.

Do services vary locally?

Yes, services do slightly vary in England and Wales. Scotland has their own laws which look to support best treatment for a person with a learning disability.

What about medical emergencies?

In an emergency (such as when a person collapses or is unconscious) urgent decisions may need to be taken in the person’s best interests to save that person’s life. It may not be practical to delay treatment in order to consult widely, or to wait for the person to regain consciousness.

Who can help locally?

There are many organisations that provide advice about consent:

IMCAS (Independent Mental Capacity Advocate)
If an IMCA is needed they can represent and support a person who lacks capacity and give views to a decision maker. A decision-maker may be a hospital doctor or consultant or nurse or audiologist or other professional who has recommended the treatment or intervention.

The IMCA should gather and evaluate information and communicate with the person with a learning disability. The IMCA should aim to understand the person’s wishes and feelings, as well as reviewing records or notes which can help. The IMCA can challenge the decision maker if he or she disagrees with the decision made. Furthermore the IMCA can explore alternative courses of action and obtain a further medical opinion, if necessary, and prepare a report for the person who called them in to support the case. IMCA services can be contacted through a local Council neighbourhood office, Citizens Advice Bureau, local advocacy service or through a local social worker.

Local Advocacy Groups
Local advocacy groups are available in all areas of the UK representing and supporting people with learning disabilities. Advocacy groups are a great source of advice or information and can help enable a person to have his or her opinion heard. Local advocacy information can be found through contacting a local Council’s neighbourhood office, Citizens Advice Bureau or through a local social worker.

Community Learning Disability Teams(CLDT)
Many people with learning disabilities have received support from their local CLDT in the past, while others continue to have this help. These multi-disciplinary teams provide support to enable individuals and their families to lead a good quality of life in the community. Staff from a CLDT can provide advice on different aspects of health care, including consent. (Multi-disciplinary teams for people with learning disabilities can include community nurses, social workers, occupational therapists, psychologists, speech and language therapists, behaviour support workers.)

Health Facilitators
Health Facilitators are professionals (often nurses) who work in many areas of England to help address the issues caused by past health inequalities affecting people with learning disabilities. Health Facilitators can provide advice or support in relation to accessing quality healthcare.

General Practitioner (GP)
GP services also remain a positive area for advice or support in relation to access to care.

Neighbourhood Offices and Citizens Advice Bureaus (CAB)
These services provide a wealth of information on many issues and can direct individuals and families to appropriate services.

What principles are relevant?

Consent

• For consent to be valid, it must be given voluntarily by an appropriately informed person who has the capacity to consent to the intervention in question (DOH 2002). If a person with a learning disability fully understands a treatment or intervention and it is in his or her best interests, then this person can consent to treatment. George (72 years old) was told by his consultant at the hospital that he needed surgery to remove cataracts which had impaired his vision. The consultant felt that George had a mild learning disability, which was confirmed by his supporter.

George could fully understand the procedure recommended by the consultant and understood possible benefits and possible risks from the treatment. George could also appreciate that there might be side effects. George consented to treatment and the cataracts were removed, resulting in improved vision for George and improved quality of life. The procedure was not only in George’s best interests but he could fully understand the issues involved in the treatment.

• Capacity should not be confused with a health professional’s assessment of the reasonableness of the patient’s decision (DOH 2002). If any adult with the capacity to make a decision refuses treatment, then this decision must be accepted (DOH 2002). People with a learning disability who understand a treatment or procedure can refuse that treatment or procedure.

Abdullah (58 years old) was told by his consultant at the hospital that he needed surgery to remove cataracts which had impaired his vision. Abdullah has a mild learning disability and could fully understand the procedure recommended by the consultant. After being given information about cataract surgery, he understood possible benefits and possible risks from the treatment as well as any potential side effects of treatment. Abdullah refused the treatment. He said he had made his mind up because he felt that he was happy with his quality of life and felt, for him, that the treatment wasn’t needed. The community nurse disagreed and noted that in her opinion Abdullah would benefit from the treatment and so treatment should proceed. Abdullah’s opinion was respected as treatment should not proceed if the person has a full understanding of the intervention or treatment, and can appreciate both positive and negative potential effects from the procedure. The community nurse must respect the individual’s opinion even if she disagrees with that opinion. It is important to recognise that Abdullah can, at any stage, change his mind. If he did change his mind, and agreed to have surgery, this decision must also be respected. Abdullah may benefit from continued monitoring and support which should continue to be offered to him.

• Care should be taken not to underestimate the capacity of a patient with a learning disability to understand. Many people with a learning disability do have the capacity to consent if time is spent explaining issues in appropriate language using visual aids and signs as necessary (DOH 2002).

It is important that the individual has enough information in order to make a decision, with all of the facts known about the proposed treatment. The person needs to have information in their chosen format which is appropriate to their language, culture, using appropriate accessible information such as speech, gesture, sign (Makaton, BSL, or Hands-on signing), symbol, picture, audio, photographs, etc. People with learning disabilities should not be expected to make important decisions without information that is accessible to them.

Advice should be sought from people who know the person well or who have information which may help. Information from key supporters can help gain the person’s co-operation and influence the way the treatment is carried out in line with best interests. All decisions and discussions should be documented so that a record is kept which shows how and why a decision has been made. Local policies and procedures should be followed in all areas.

It is always important to act in the individual’s ‘best interests’. Best interests relates to actions or interventions that support a person to get the best outcome in the most humane way possible. Best interests aim to promote valued care and help overcome inequalities in health care. It aims to ensure that any decision made for a person who lacks capacity is made without discrimination and that the decision is carried out in the least restrictive way possible.

Marcus (24 years old) was told by his consultant at the hospital that he needed surgery to remove cataracts which had impaired his vision. Marcus had previously been assessed as having a severe learning disability and Autistic Spectrum Disorder. Marcus could not fully understand the procedure recommended by the consultant and could not understand possible benefits and possible risks from the treatment as well as any potential side effects of treatment. Pictures, photographs, gestures, and the spoken word were used to communicate with Marcus in order to aim to raise his awareness of the proposed treatment. A meeting was arranged to explore Marcus’s best interests and referrals were made to the IMCA service as well as involving the social worker, family carers and local community nurse who knew Marcus well. Marcus could co-operate with the treatment even through he didn’t understand. Treatment proceeded in Marcus’s best interests, with everyone agreeing that cataract surgery would improve Marcus’s quality of life.

How do you establish competence?

In order to gain awareness of an individual’s ability to consent it is important to see if the person understands the treatment/procedure they are to receive and why. It is often helpful to ask them to tell you why the treatment is necessary. Simple questions such as

• What operation are you going to have?
• Why are you having the operation?
• What will happen after the operation?
• Do you know where the treatment/procedure will take place?
• Can you tell me about the different things that will happen?

Seek advice if you have any doubt about the person’s ability to consent to the treatment - such as having problems answering the questions. Contact the IMCA, Advocate, and Community Learning Disability Team and get the person’s key supporters to give their opinion.

The ability to consent is not clear on all issues. Each intervention should be viewed separately. Each person’s ability to consent can change over time so consent needs to be considered in every instance. The person’s capacity to make a decision in one situation is not a blank cheque to cover all interventions.

Who should seek consent?

The clinician (usually the doctor, nurse or therapist) providing the treatment or investigation is responsible for ensuring that the patient has given valid consent before the treatment begins (DOH 2001b). Family carers and staff can support the process of gaining the person’s consent. They can also contribute as part of the multi-disciplinary team when the person’s best interests are discussed.

There is a considerable amount of information concerning consent and it is worth looking at local policies and procedures as well as thinking about how they apply to individuals. The golden rule is that services need treat everyone humanely and always act in the person’s best interests.

Patricia (56 years old) was told by her consultant at the hospital that she needed surgery to remove cataracts which had impaired her vision. Patricia had previously been assessed as having a severe learning disability and could not fully understand the procedure recommended by the consultant. She could not understand possible benefits and possible risks from the treatment, nor could she appreciate potential side effects of treatment. Pictures, photographs, gestures, and the spoken word were used to communicate with her in order to raise her awareness of the proposed treatment. Patricia had recently moved to a residential unit after her brother, who was her main carer died, and staff at the home were getting to know her. A meeting was arranged to explore Patricia’s best interests. Referrals were made to the IMCA service as well as involving the social worker, staff from the home and local community nurse who knew Patricia well. The team noted at a best interests meeting that Patricia would find it difficult to tolerate aspects of her treatment. It would be hard for her to co-operate with the treatment which she couldn’t understand. A referral was made to a psychologist so they could help Patricia become more familiar with some aspects of the treatment - such as wearing a patch over one eye and accepting eye drops. Plans were made to ensure staff would be available to support her throughout her time in hospital, with the hospital also providing additional nursing support while she was an in-patient.

In a small number of cases an individual may present with a moderate or severe learning disability and a treatment or intervention is felt to be needed in the person’s best interests. It is essential that the IMCA service is consulted to support the person if they have great difficulty complying with the treatment, despite having appropriate support. If the person’s human rights may be infringed, it is important to seek legal advice.

It is always worth recording the journey (from initial discussion to final treatment and aftercare) so that a written ‘trail’ is available for future reference. This can indicate why certain decisions have been made. A decision without a paper trail can appear to be irrational or ill thought through but a ‘paper trail’ can identify why decisions have been made which can support justification of a decision.

Scotland

In Scotland the Adults with Incapacity Act (2000) aims to not only protect people with learning disabilities but also to promote as much independence as possible for each individual. The Act covers many areas of life, including medical treatments.

The Act sets out principles which ensure that any intervention is of benefit for the individual and takes into account the person’s wishes. It supports people over the age of 16 and seeks to make sure that each person’s rights are promoted, even when they are unable to make a decision. The Act looks to be the least restrictive possible and takes into account the views of others, such as the main carer.

More information on the Adults with Incapacity Act (2000) can be found at

• http://www.scotland.gov.uk/Topics/Justice/law/awihttp://www.scotland.gov.uk/Topics/Justice/law/awi
• http://www.publicguardian-scotland.gov.uk/

Enable Scotland can provide useful information or advice on Scottish legislation - while Look Up can provide general advice or information regarding all eye care issues. (Information on how to contact Enable and Look Up can be found in the ‘Sources of help and advice’ section later in this factsheet.)

Conclusion

Consent is an essential part of providing humane care which is always carried out with the person’s best interests at heart. Consent is aimed at supporting quality care for people with learning disabilities. It is not a process for denying, delaying or preventing an individual from obtaining care or treatment that a person has chosen or which is being pursued in line with their best interests.

References and further reading
Department of Health (2002) Reference guide to consent for examination or treatment. DOH. London.

Department of Health (2001a) Consent - what you have a right to expect, a guide for relatives and carers. DOH. London.

Department of Health (2001b) Reference guide to consent for examination or treatment. DOH. London.

Department of Health (2001c) Consent, a guide for people with learning disabilities. DOH. London.

DIMOND, B (2005) Legal aspects of nursing. (4th ed.) Pearson Longman. London.

United Kingdom Parliament (2005) Mental Capacity Act. UK Parliament. London.

United Kingdom Parliament (1998) Human Rights Act. UK Parliament. London.

United Kingdom Parliament (1995) Disability Discrimination Act. UK Parliament. London. 

Sources of help and advice

 
ENABLE Scotland, National Office Address, 6th Floor, 7 Buchanan Street, Glasgow, G1 3HL, Telephone: 0141 226 4541. Fax: 0141 204 4398. Email: enable@enable.org.uk.  

Look Up information service. www.lookupinfo.org.  Telephone: 0800 121 8900.

NHS Direct provides 24-hour health care advice delivering telephone and e-health information services day and night direct to the public. www.nhsdirect.nhs.uk.  Telephone: 0845 4647.

National Autistic Society. www.nas.org.uk