Advance Statements and Advance Decisions to Refuse Treatment Policy

Advance Statements and Advance Decisions to Refuse Treatment Policy DOCUMENT CONTROL: Version: V4 Ratified by: Mental Health Legislation Sub Committee Date ratified: 22 December 2017 Name of originator/author: Mental Capacity Act Lead Name of responsible Mental Health Legislation Committee committee/individual: Date issued: 2 March 2018 Review date: December 2020 Target Audience All clinical staff

Section CONTENTS Page No 1 INTRODUCTION 4 2 PURPOSE 5 2.1 Definitions 5 2.1.1 Advance Statements 5 2.1.2 Advance Decisions to refuse treatment (ADRT) 6 3 SCOPE 6 4 RESPONSIBILITIES, ACOUNTABILITIES AND DUTIES 7 4.1 Chief Executive 7 4.2 Care Group Directors 7 4.3 Clinical Managers 7 4.4 Clinical Staff 7 5 PROCEDURE/IMPLEMENTATION 7 5.1 Advance Statement 7 5.2 Advance Decision to refuse treatment 9 5.2.1 Valid and applicable 10 5.3 Patients detained under Mental Health Act 1983 (MHA) 12 5.3.1 Electroconvulsive therapy (ECT) 12 5.4 Making an Advance Decision to refuse treatment 13 5.5 Life sustaining treatment 15 5.6 Responding to an existing Advance Decision to refuse treatment 5.6.1 Emergency Treatment 16 5.7 Withdrawal of Advance Decision to refuse treatment 16 5.8 Review/Updating of Advance Decision to refuse treatment 16 5.9 Invalid or Inappropriate Advance Decision to refuse treatment 17 5.10 Advance Decision to refuse treatment - Doubt or Disagreement 5.11 Storage of Advance Decision to refuse treatment 17 6 TRAINING IMPLICATIONS 17 7 MONITORING ARRANGEMENTS 18 8 EQUALITY IMPACT ASSESSMENT SCREENING 18 8.1 Privacy, Dignity and respect 18 8.2 Mental Capacity Act 18 9 LINKS TO ANY ASSOCIATED DOCUMENTS 19 10 REFERENCES 19 16 17 Page 2 of 31

CONTENTS Section Page No 11 APPENDICES 19 Appendix 1 Basic/Essential Care 20 Appendix 2 Advance Statement Pro-forma 21 Appendix 3 Advance Decision to refuse treatment Pro-forma 25 Appendix 4 Flow Chart 31 Page 3 of 31

1. INTRODUCTION Usually a person is able to discuss care and treatment options when they are unwell and a joint decision can be made about future care and treatment options. When an adult has capacity they can refuse treatment and it cannot be given without a person`s valid consent except for some circumstances under the Mental Health Act 1983. Communication is the key to the provision of safe and effective care and is essential whether this is before capacity is lost and a person is considering their future, when capacity is diminished or fluctuating, and with relatives, carers, advocates and the care team when capacity is lost. There are occasions when a person is unable on a temporary or permanent basis to communicate their wishes and consent to or refuse treatment. The Mental Capacity Act 2005 (MCA) provides the legal framework for acting and making decisions on behalf of individuals who lack capacity to make particular decisions for themselves. It includes many provisions to protect the rights of those who lose capacity to make decisions and provides several ways that people can influence what happens to them if they are unable to make a particular decision in the future including: Advance Statements expressions of wishes and feelings Advance Decision to refuse medical treatment (ADRT) Rotherham Doncaster and South Humber NHS Foundation Trust (the Trust) acknowledge that it is the right of every competent adult patient to influence their care and treatment and that Advance Statements and Advance Decisions to Refuse Treatment (ADRT) provide an opportunity to support autonomy, shared decision making and the recovery process. In striving to achieve a more balanced partnership between patients and health & social care professionals the Trust has developed this Policy. Its aim is to assist and guide those patients who wish to plan for their future care and provide clear guidance to those health professionals responsible for delivering such care. Making decisions in advance might help to ensure that the care a person receives is the care that s/he would want in certain circumstances. This policy provides a framework for the effective support of this process and the Trust actively encourages all patients to plan ahead. This policy should be read in conjunction with the MCA 2005 and the MCA Code of Practice (2007). It is not a substitute for the MCA and the Code of Practice, to which all professionals must adhere. This policy assumes a knowledge and understanding of the Trusts MCA Page 4 of 31

2005 Policy and should be read in conjunction with it. Other Trust policies to be read in conjunction with this policy are: Consent to Care and Treatment policy Mental Health Act 1983 Professionals must act with due care and attention and may be legally liable if they disregard a valid and applicable ADRT. 2. PURPOSE The purpose of this policy is to ensure that wherever possible, patients in receipt of care from Rotherham Doncaster and South Humber NHS Foundation Trust (the Trust) will have their expressed wishes in an Advance Statement and legal rights that are contained in an Advance Decision to Refuse Treatment (ADRT) respected and upheld where they are valid and applicable. The Trust is committed to ensuring that all patients within the Trust who are using our services are treated with dignity and respect and individuals and their families/carers receive appropriate care and support. This includes encouraging patients to set out their wishes in advance and encouraging collaboration and trust between patients and professionals. 2.1 Definitions The definitions set out here are to ensure clarity, as there are a number of terms to describe Advance Statements that are often used interchangeably, sometimes misleadingly. Note: the term Professional within the context of this policy relates to all Health/Allied/Social Care Professionals. 2.1.1 Advance Statements An Advance Statement is an expression of a person`s wishes, feelings, beliefs and values about how they would prefer to be cared for/treated if they lose capacity to make decisions for themselves. Such expressions of wishes/preferences must be taken into account when considering an incapacitated patient's best interests, but are not legally binding. Patients who understand the implications of their choices can state in advance how they wish to be treated if they suffer loss of mental capacity. An Advance Statement can reflect their religious beliefs or other beliefs that they have and allows the patient to state how they would like to be treated should they not be able to communicate their wishes in the future. Advance Statements can be used to nominate a person to be consulted (if Page 5 of 31

practicable and appropriate) with at a time a decision has to be made, although at present their view is not legally binding. However, if the nominated person has also been granted Lasting Power of Attorney to make personal welfare decisions, the decision of the person with Lasting Power of Attorney will be binding. Advance Statements can also be used to inform health professionals of how the person would prefer to be treated medically. Section 4(6) (a) of the MCA places special emphasis on written statements the person may have made before losing capacity, which could provide relevant information when best interests decision have to be made on their behalf. 2.1.2 Advance Decisions to refuse treatment (ADRT) An ADRT is a refusal to accept certain medical treatments in the future if specified circumstances arise once the person has lost capacity. ADRTs are sometimes also known as advance directive, advance refusal or living will. However, the statutory term is Advance Decision and to make it clear to staff the term Advance Decision to Refuse Treatment (ADRT) will therefore be used in the remainder of this Policy. A valid ADRT which is applicable to the circumstances which arise is legally binding in the same way as a contemporaneous refusal by a person with capacity. Professionals may be legally liable if they treat a patient in the face of a valid and applicable ADRT. An ADRT does not give an individual the right to demand specific treatment at the time of making it or in advance. Advance Statements and ADRTs cannot be used when the patient has the capacity to consent to, or refuse, the proposed treatment. 3. SCOPE Rotherham Doncaster and South Humber NHS Foundation Trust (the Trust), supports the use of Advance Statements and ADRT to enhance communication between patients, carers and staff. This policy applies to all patients who have made an Advance Statement or ADRT. It also applies to all staff to make them self-aware of the presence of an Advance Statement or ADRT when a patient attends for care, and to consider the statement as stated within this policy below. This policy applies to everyone in a paid, professional or voluntary capacity who is involved in the care, treatment or support of patients over 16 years under the umbrella of Rotherham Doncaster and South Humber NHS Foundation Trust (the Trust). This includes staff employed by the Trust, social care and health staff who are either seconded to the Trust or work in partnership with the Trust and volunteers who are working within the Trust. Page 6 of 31

4. RESPONSIBILITIES, ACCOUNTABILITIES AND DUTIES 4.1 Chief Executive The Chief Executive is responsible for there being a structured approach to policy development and management. Responsibility for this policy is delegated to: 4.2 Care Group Directors The Care Group Directors for each locality are the Directors accountable for this Policy. 4.3 Clinical Managers make a copy of this policy available to staff and to check staff have read it and are in a position to incorporate this policy into their practice. make sure staff receive sufficient training and support to undertake their role. 4.4 Clinical Staff It is each individual s responsibility to ensure they make themselves aware of this policy and receive sufficient training and information about Advance Statements and ADRT to undertake their role. 5. PROCEDURE/IMPLEMENTATION 5.1 Advance Statement A person aged 16 and over may make a general Advance Statement reflecting their wishes and feelings, about how they would like to be treated in the future if they lose capacity. For some patients it is aimed towards planning for a crisis/relapse/acute episode when the individual is unable to make their preferences unknown. It can also be used as part of end of life care planning. An Advance Statement does not bind doctors and professional staff to a particular course of action if it conflicts with their professional judgement or if the treatment preferences described are not considered appropriate or necessary (e.g. taking into account available resources). Patients should be made aware of this. However whilst an Advance Statement does not have any basis in law, if a patient or their family has made staff aware that they have a written Advance Statement, staff must be able to demonstrate that the patient s wishes have been taken into account as part of considering what is in their best interests if they lose capacity. If a patient`s wishes are not followed clear reasons for Page 7 of 31

this must be documented in the patient s records as part of the best interest`s process. It is important to consider an Advance Statement when planning care and treatment. Examples of issues which may be included in an Advance Statement: An appointment of representative: a person may name another person to be consulted about health care decisions when he/she is are incapable of deciding for him/herself. That named person should then be consulted as part of consideration of what is in the patient`s best interest once they lose capacity. However, the views of the named person will not be legally binding unless that person has been formally given Lasting Power of Attorney to make personal welfare decisions on a patient's behalf or is a Court Appointed Deputy under the provisions of the MCA 2005. A statement about wishes in relation to a particular treatment: the patient would like to receive should they become unwell. Although not legally binding on doctors/other staff, this should be taken into account when deciding treatment. A statement in relation to how and where they should be cared for: at a time when their condition may deteriorate and they are no longer able to care for themselves. A statement of general beliefs: on various aspects of life, which an individual values. This statement contains no specific request or refusal but attempts to paint a picture of the individual as an aid to healthcare professionals in deciding what the patient would want. To make an Advance Statement: The patient must have capacity at the time it is written. If there any doubts about the persons capacity then an assessment of capacity should be undertaken and recorded on MCA1 The Advance Statement should preferably be in writing, although a patient`s verbally expressed wishes should also be taken into account when considering what is in their best interests. Staff should facilitate the recording of a patient s Advance Statement in writing, if the patient has the capacity, but is unable to write. There is no set format for an Advance Statement. The patient may wish to use the Trusts template (see Appendix 1) or it could be written in another form such as the Wellness Recovery Action Plan (WRAP). This has been adopted by many patients and carers across RDaSH as the preferred model to support self-management and recovery, which Page 8 of 31

includes a section on Crisis Planning which is to all intents and purposes the same as an Advance Statement. The content of an Advance Statement should be the patients own views and wishes, and should not be unduly influenced by any other person. The Advance Statement must be clear in meaning. If the statement is unclear or ambiguous it must be discussed, and clarified with the patient while they still have capacity. An Advance Statement can be made in conjunction with the care coordination process under Care Programme Approach, and a copy should be kept within the care record. It is important to ensure that all patients are given information about Advance Statements during their assessment and/or CPA review. Patients can withdraw or alter their Advance Statement at any time while they have capacity. It is the patient s responsibility to notify the Trust of any changes made to their Advance statements. Assistance in writing an Advance statement should always be offered to those individuals who have sensory impairment or who lack confidence in completing written forms. The provision of an interpreter should also be provided as required. If a patient wishes to refuse a particular treatment in the future the process of making an advance decision to refuse treatment (ADRT) should be explained to them. Any Advance Statement needs to be signed by the patient and witnessed by an appropriate person to validate the signature. A copy of the statement should be scanned and stored on the patient record and an appropriate entry made to alert staff of its existence. With the agreement of the individual, a copy of the Advance Statement should be circulated to all members of the care team. Staff should ensure that the patient wishes are considered in situations where they are relevant in the future. An Advance Statement should be reviewed with the patients every 6 months through the process of Care Co-ordination review. If the review results in changes to the Advance Statement the updated document should be circulated as above and copies of the original document made inactive. 5.2. Advance Decision to Refuse Treatment (ADRT) An ADRT can only be made by an individual aged 18 and over with capacity to make advance care and treatment decisions. Page 9 of 31

In the event of them losing capacity in the future, a properly made ADRT is as valid as a contemporaneous decision (that is, one made at that time). Patients can only make an advance decision to refuse treatment. Nobody has the legal right to demand specific treatment, either at the time or in advance. An ADRT is preferably a written document where the content has been agreed through discussion and negotiation between the person making it and the people involved in their care and treatment, including where appropriate family members and carers. A verbal ADRT can be made, unless it is about refusal of life sustaining treatment, in which case specific criteria need to be met. A written ADRT is a document owned by the patient and shared with the Trust. It is not the property of the Trust or a document that requires staff to ensure is completed. Before healthcare professionals can apply an ADRT, there must be proof that:- It exists Is valid, and Is applicable in the current circumstances A valid ADRT refusing treatment, applicable to the arising circumstances, is legally binding and therefore must be followed. The ADRT may be written in medical language or in lay terms, but must be clear and unambiguous in order to be legally enforceable. The health professional treating the patient must be assured of the following to ensure that the ADRT is valid and applicable. 5.2.1 Valid and applicable In order for the ADRT to valid and applicable the following conditions must apply: The person had capacity to make the decision at the time the decision was made. For most people there will be no doubt about their capacity to make an ADRT. In line with Principle 1 of the Act, that a person must be assumed to have capacity unless it is established that he/she lacks capacity. Professionals should always start on the assumption that the patient had capacity at the time they made it unless there was reasonable grounds to doubt the person had capacity at the time they made it. However although it is not a requirement of the Act, in some particular cases if the decision is about life-sustaining treatment or may be challenged in the future it may be useful to get evidence of a person`s capacity at the time they make the decision. Page 10 of 31

Professionals must be satisfied that the ADRT was made whilst the person had capacity, and was not affected by (for example) illness or medication. To make a valid ADRT the person must be judged to be competent or to have necessary mental capacity to make the decision at the time it was made. The person is free from the undue influence of others. Professionals must be satisfied that the ADRT was not based on false information or pressure from other people. The person is sufficiently informed. Professionals must assure themselves that the person understood the implications of the decision they made at the time and also that the person has acted in a way consistent with the ADRT. The person intends the refusal to apply to the circumstances that subsequently arise. The person must have envisaged the type of situation the decision applies to. To be applicable, an advance decision must apply to the situation in question and in the current circumstances. For example, a new anti-psychotic medication becoming available after an ADRT is made. If it is not specified, the ADRT could be taken to mean that a refusal of medication might not apply to newly available medication. An ADRT is not valid when: The patient has withdrawn the ADRT, at a time when he or she has capacity to do so (NB. withdrawal of an ADRT does not have to be in writing). The patient after making the ADRT has made a Lasting Power of Attorney (LPA) for health and welfare, giving the attorney authority to make treatment decisions that are the same as those covered by the ADRT. The patient has done something that clearly goes against the ADRT which suggests they have changed their mind. An Advanced Decision refusing life sustaining treatment will not be valid unless the ADRT is in writing, signed by the patient in the presence of a witness and includes a clear, specific statement by the patient to the effect that the decision is to apply to the specific life sustaining treatment even if his or her life is at risk; An ADRT refusing basic care (see definition Appendix 1) is also invalid. An ADRT may not refuse, for example, warmth, shelter and hygiene measures to maintain body cleanliness. This includes the offer of oral food and hydration, but not artificial nutrition and hydration. Such care may be provided in the best interests of a person lacking capacity to consent to it. Page 11 of 31

An ADRT will not be applicable if: The proposed treatment is not the treatment specified in the ADRT The patient has the capacity to accept or refuse the treatment at the relevant time; There are reasonable grounds for believing that circumstances now exist which the patient did not anticipate at the time of writing the ADRT, which would have affected the decision, such as advances in treatment or changes in patient s religious beliefs. So when deciding whether an ADRT applies to the proposed treatment, professionals must consider:- How long ago the ADRT was made, and Whether there have been changes in the patients personal life that might affect the validity of the ADRT (for example the person is pregnant and this was not anticipated when they made the ADRT) Whether there have been developments in the medical treatment that the person did not for see (for example new medication, treatment or therapies). 5.3 Patients detained under the Mental Health Act (MHA) 1983 The MHA 1983 takes precedence and prevails over an ADRT when it comes to treatment for mental disorder. This means that where a patient is subject to compulsory detention and treatment under Part IV of the MHA 1983 an ADRT is not legally binding on decisions relating to the patient s mental disorder. However, the Responsible Clinician should take an ADRT into consideration when deciding upon a treatment plan and where it is decided to go against the patients preferred wishes the reason is to be recorded in the patient s clinical records. Decisions made by detained patients will still be legally binding insofar as they relate to treatment which is not connected with their mental disorder. For example, a decision refusing treatment for a patient s physical health, which is not covered by the MHA 1983, must be adhered to if, it is valid and applicable to the circumstances. Treatment for a patient s mental disorder under the MHA 1983 can include treating the symptoms or consequences of the mental disorder, as well as the treatment/s which are a necessary pre-requisite to treatment for the patient`s mental disorder. For example, feeding a detained patient with anorexia nervosa by nasogastric tube would be likely to come under compulsory treatment under the MHA 1983 because the treatment (feeding) is aimed at treating a symptom of the mental disorder. 5.3.1 Electroconvulsive therapy (ECT) If a patient lacking capacity has made a valid and applicable ADRT to refuse ECT or an attorney under a Lasting Power of Attorney, or a court-appointed Page 12 of 31

deputy, or a Court has refused ECT on the patient`s behalf, then the ECT should not be given, even if detained under the MHA, unless treatment is needed in an emergency, when it can be given under section 62 of the MHA if certain circumstances apply. Although the MHA allows ECT to be given in an emergency to a person who has made an advance decision to refuse it, this would only happen in exceptional cases. 5.4 Making an Advance Decision to Refuse Treatment It is up to individuals to decide whether they want to refuse treatment in advance. If they are over 18 they are entitled to do so if they wish, but there is no obligation to do so. It is important that the ADRT is completed when an individual feels best able to represent their wishes clearly and to record them/have them recorded formally Patients must have capacity to make an ADRT. The Mental Capacity Act 2005 (MCA) presumes capacity, however if there is any doubt about their capacity at the time of making the ADRT an assessment should be undertaken and recorded on MCA1 (which can be found on the Trust intranet). This will ensure there are no doubts over their capacity at the time, if concerns are raised later. There is no nationally agreed or set format for an ADRT the patient may use whatever format they wish, including a verbal statement. Some patients may prefer not to make what they consider to be a legalistic document but instead talk to professionals about their wishes to refuse treatment and have these recorded in their medical notes and/or CPA documentation. In such cases, patients should be encouraged to check the notes made about them to ensure that they agree with what is written and sign and date them. Patients can use the Trust pro-forma (Appendix 2) if they wish. Staff can help patients who need help to record their wishes and ask the patient to check the content to ensure they agree with what is written. The individual and a witness should sign and date a written ADRT, (although signing and witnessing the ADRT is not necessary to make the refusal legally binding unless it is intended to apply to life sustaining treatment (see point 5.5 on life sustaining treatment below). The witness should only witness the patient s signature and confirm that it appears that the maker intends the signature to give effect to the ADRT. The role of the witness does not involve certifying the capacity of the person making the ADRT. In some situations, a professional such as a doctor may be asked to act as witness; however an ADRT does not have to be signed by a doctor to make it valid. In drawing up an ADRT it is Page 13 of 31

recommended that where the Trust pro-forma is not used the written document contains the following information: Patients full name Address Name and address of General Practitioner or Consultant Whether advice was sought from health professionals A statement that the ADRT is intended to have effect if the maker lacks capacity to make treatment decisions A clear statement of the decision, specifying the treatment to be refused and the circumstances in which the decision will apply or which will trigger a particular course of action Signature of the person the ADRT refers to Date drafted and date reviewed Witness signature, date and relationship with individual. The Advance Decision must: Set out clearly the treatment which is not to be carried out or continued Set out any circumstances which are applicable to the decision Professionals consulted at the drafting stage must take reasonable steps to ensure that patient s decisions are not made under duress. If professionals, when consulted, suspect there may be duress or undue influence from others, they must take steps to bring this to the attention of the appropriate Manager. Decisions may evolve in stages over time and with discussion. It is not advisable to make complicated decisions at one time without further review. It is useful for the patient to consult with carers and other health professionals when making ADRT to ensure that their decisions are based on realistic views. Written ADRTs should use clear and unambiguous language. Therefore, professionals must consider the following if asked for assistance with an ADRT: Does the patient have sufficient knowledge of the condition? Does the patient have sufficient knowledge of possible treatment options if there is a known illness? Is it clear that the patient is reflecting their own view and is not being pressured by other people? Professionals need to ensure that patients are aware of the risks of ADRT as well as the benefits. Professionals need to be aware that any doubt or ambiguity about intention or capacity at the time of drafting the decision could lead to it becoming invalid. Information should be provided in an accessible format to assist in making informed choices. Page 14 of 31

ADRT should be understood as an aid to, rather than a substitute for, open dialogue between patients and health professionals. An open attitude and a willingness to discuss the advantages and disadvantages of certain options can do much to establish trust and mutual understanding. Professionals must document in the clinical records all involvement and discussions about ADRT. It is worth noting that some forms of treatment contained in ADRT should also be reflected in CPA documentation such as the CPA crisis plan. Care must be taken to ensure these are not contradictory. Where an ADRT is received by a professional in the form of an oral statement, this be should recorded on the Trust Pro-forma and the patient should be asked to sign this document in the presence of a witness (the witness should not be the staff member who records the ADRT). A copy of the ADRT should be scanned and stored on the patient record and an appropriate entry made to alert staff of its existence. With the agreement of the individual, a copy of the ADRT should be circulated to all members of the care team. Staff should ensure that the patient wishes are considered in situations where they are relevant in the future. 5.5 Life sustaining treatment Life-sustaining treatment is defined as treatment which a person providing health care regards as necessary to sustain life. Whether a treatment is life sustaining depends not only on the type of treatment, but also on the particular circumstances in which it may be prescribed. For example, in some situations giving antibiotics may be life sustaining, whereas in other circumstances antibiotics are used to treat non-life-threatening conditions. The important factor here is that the treatment is necessary to sustain life at that time. It is for the doctor to assess whether a treatment is life-sustaining in each particular situation. Artificial nutrition and hydration (ANH) has been recognised as a form of medical treatment. ANH involves using tubes to provide nutrition and fluids to someone who cannot take them by mouth. It bypasses the natural mechanisms that control hunger and thirst and requires clinical monitoring. An advance decision can refuse ANH. Refusing ANH in an advance decision is likely to result in the person s death, if the advance decision is followed. If the ADRT includes an advance refusal of life- sustaining treatment, a requirement within the MCA 2005 is that it must be in writing and should state that the ADRT is to apply even if life is at risk. It must be signed and dated by the patient (or by another, on behalf of the patient and in the patient s presence) and when the ADRT is signed it must be witnessed and then countersigned and dated by the witness. Page 15 of 31

5.6 Responding to an existing Advance Decision to refuse treatment Professionals will be protected from liability for failing to provide treatment if they reasonably believe that a valid and applicable ADRT exists. Therefore, staff should try to ascertain if a new patient has an ADRT as soon as possible. Where the existence of an ADRT is/becomes known then the following steps must be taken: Consider any evidence that at the time of making the ADRT the person lacked capacity, and immediately advise the patient's GP/consultant of concerns and of the available evidence; Ensure all staff, in particular medical staff, are made aware of the ADRTs existence and that an appropriate note is made and retained in a prominent position in the patient's clinical file; Check the validity of the ADRT with the patient or where this is not possible consult the individuals identified in the statement i.e. named persons, witnesses. However a statement or ADRT is not invalid just because it has not been possible to check with the individuals identified; and Declare any conscientious objections to carrying out the instructions of the ADRT and arrange for an alternative worker as necessary. 5.6.1 Emergency Treatment Emergency treatment must not be delayed in order to look for the ADRT, if there is no clear indication that one exists. If doubt arises as to the existence of an ADRT the matter may be referred to the courts for a decision. Professionals may be legally liable if they disregard the terms of an ADRT, or if it is known that the ADRT exists and is valid and applicable to the proposed treatment. However under the MCA, if there are any significant doubts about the validity of an ADRT then the professional will be obliged to treat the person under best interests until clarification is obtained. This would need to be clearly recorded. 5.7 Withdrawal of Advance Decisions to refuse treatment An ADRT may be withdrawn by the patient at any time providing they have capacity to do so. The withdrawal of an ADRT does not need to be in writing, including in the case of advance refusals of life sustaining treatment - i.e. a verbal withdrawal will be sufficient, but should be recorded in the patients case notes where the ADRT was originally recorded. The person who has made the ADRT should tell anyone who knew about the ADRT that it has been cancelled. 5.8 Reviewing/Updating Advance Decisions to refuse treatment Patients can make changes to an ADRT verbally or in writing. Patients who make an ADRT should be advised to regularly review their decisions. Any changes should be recorded in the patients health care notes or a copy of Page 16 of 31

the updated ADRT obtained. ADRT made a long time ago before the proposed treatments are not automatically invalid. However, if a long period of time has elapsed since the ADRT was made, this may raise doubts about the extent to which it remains valid and applicable. 5.9 Invalid or Inapplicable Advance Decisions to refuse treatment If an ADRT is not valid or applicable to the current circumstances, professionals must nevertheless consider the ADRT as part of their assessment of the patient's best interests if they are unable to make the decision themselves. 5.10 Advance Decision to refuse treatment - Doubt or Disagreement In the event that there is doubt or disagreement about the validity or applicability of and ADRT all staff have a responsibility to discuss with their professional lead (i.e. Nurse Consultant, Clinical Director, and Mental Capacity Act Lead) who will if appropriate refer to the relevant Medical Director or Care Group Director. However, if the matter remains unclear, legal advice should be sought with a possible view to seeking clarification as to the validity or applicability of the ADRT from the Court of Protection. 5.11 Storage of an Advance Decision to refuse treatment The patient who has made the ADRT, independently, should arrange for it to be drawn to the attention of the Trust s staff. It is advisable that several people, including the patient s GP, have a copy of the ADRT stored with them or are at least made aware of its provisions. A copy of the ADRT will be filed at the front of the first section of the patient`s medical notes or a copy scanned and filed on their electronic record. If a patient who is receiving treatment in the community makes an ADRT then they should arrange for their care co-ordinator to receive a copy. This should ensure that the existence of the ADRT is brought to the attention of Trust staff if the person is subsequently admitted. The care co-ordinator should also arrange for a copy of the ADRT to be placed in the relevant medical records and to be noted on the electronic patient record 6. TRAINING IMPLICATIONS As a Trust policy, all staff must be aware that Advance Statements and Advance Decisions to refuse treatment form part of the Mental Capacity Act training which is mandatory for all clinical new starters to the Trust. Following this all qualified clinical staff are require to undertake specific enhanced MCA training as identified by their manager. The Training Needs Analysis (TNA) for this policy can be found in the Training Needs Analysis document which is part of the Trust s Mandatory Risk Management Training Policy located under policy section of the Trust website. Page 17 of 31

7. MONITORING ARRANGEMENTS Area for monitoring Training Policy Implementation How Who by Frequency Reported to Training Records Clinical audit Mental Health/MCA Training Coordinator Mental Capacity Act Lead Annual as part of report on MCA training Annual as part of audit of MCA Policy Mental Health Legislation Committee Mental Health Legislation Committee 8. EQUALITY IMPACT ASSESSMENT SCREENING The completed Equality Impact Assessment for this Policy has been published on this policy`s webpage of the Trust Policy website. 8.1 Privacy, Dignity and Respect The NHS Constitution states that all patients should feel that their privacy and dignity are respected while they are in hospital. High Quality Care for All (2008), Lord Darzi s review of the NHS, identifies the need to organise care around the individual, not just clinically but in terms of dignity and respect. As a consequence the Trust is required to articulate its intent to deliver care with privacy and dignity that treats all patients with respect. Therefore, all procedural documents will be considered, if relevant, to reflect the requirement to treat everyone with privacy, dignity and respect, (when appropriate this should also include how same sex accommodation is provided). Indicate how this will be met There is no requirement for additional consideration to be given with regard to privacy, dignity or respect. 8.2 Mental Capacity Act Central to any aspect of care delivered to adults and young people aged 16 years or over will be the consideration of the individuals capacity to participate in the decision making process. Consequently, no intervention should be carried out without either the individuals informed consent, or the powers included in a legal framework, or by order of the Court. Therefore, the Trust is required to make sure that all staff working with individuals who use our service are familiar with the provisions within the Mental Capacity Act 2005. For this reason all procedural documents will be considered, if relevant to reflect the provisions of the Mental Capacity Act 2005 to ensure that the interests of an individual whose capacity is in question can continue to make as many decisions for themselves as possible. Indicate How This Will Be Achieved All individuals involved in the implementation of this policy should do so in accordance with the Guiding Principles of the Mental Capacity Act 2005. (Section 1) Page 18 of 31

9. LINKS TO ANY ASSOCIATED DOCUMENTS Consent to Care and Treatment Policy ECT Policy Care Programme Approach Policy Mental Capacity Act Policy Mental Health Act Policies 10. REFERENCES Mental Capacity Act 2005 Mental Capacity Act Code of Practice Mental Health Act 1983 [as amended by the Mental Health Act 2007] The Children s Act 1989 Human Rights Act 1998 Care Standards Act 2000 Data Protection Act 1998 National Health Service and Community Care Act 1990 11. APPENDICES Page 19 of 31

Appendix 1 Basic/Essential Care Basic/essential care means those procedures which are solely or primarily designed to keep an individual comfortable. This includes warmth, shelter, pain relief, management of distressing symptoms (such as breathlessness and vomiting) and hygienic measures such as management of incontinence. The administration of medication or the performance of any procedure which is solely or primarily designed to provide comfort to the patient or alleviate that patient s pain, symptoms or distress are facets of basic care. In the face of a valid ADRT refusing all physical care interventions only those measures essential for a patient s comfort should be given. Therefore, appropriate food or drink should be made available for (but not forced upon) all patients. Artificial nutrition and hydration should not be given to a patient who has made a valid and applicable advance refusal of this treatment. If the physical condition of the patient is starting to deteriorate, then legal advice should be sought as a matter of urgency. Authorisation to obtain legal services should be obtained through the Medical Director. If there is doubt about the validity of an apparent refusal, life-sustaining treatment and treatment to prevent a serious deterioration in the patient s health can be provided while a decision is being sought from the Court. Page 20 of 31

Appendix 2 Form A ADVANCE STATEMENT Important note for health and social professionals Advance statements are not legally binding but should be taken into account if the person lacks capacity to express their wishes and a best interest`s decision needs to be made on the person behalf in relation to their care needs, where they would like to be cared for and whom they would like to be involved in their care. If it is not possible to follow a patient s wishes clear reasons for this must be documented as part of the best interest`s process. Discussion with people involved in your life Before writing down your wishes, you may want to talk through your plans with your family or a close friend. This can be particularly helpful if you want then to be involved in your care. You may also wish to discuss your wishes with a health care professional such as your GP, nurse or social worker. It is important to discuss whether your wishes are realistic. Part 1 - My details Name Date of birth NHS number (or other identifier) Address and postcode Phone Email address Page 21 of 31

Part 2 - My wishes My priorities, special requests or preferences about future care (including details of my wishes, feelings, faith, beliefs and values are listed below: Page 22 of 31

Where I would like to be care for if my condition deteriorates: The things I would prefer not to happen to me: Who I would like to be consulted when decisions need to be made on my behalf Name Address Contact details Relationship It is recommended that the information detailed in this statement is shared with the relevant health and social care professionals who are involved in your care. Unless people know what is important to you, they won`t be able to take your wishes into account. Are you happy to share the information? Yes No Part 3 - My signature Signature Date Page 23 of 31

Part 4 Changes to your wishes You should regularly review this statement to make sure it still represents your wishes and preferences. In the box below you should make a note of any changes you want to make. Each change must be signed and dated. Make sure all interested parties (for example, your family, friends and any health and social care professionals involved in your care) are told about any changes. Details of changes made Signature Date Details of Changes made Signature Date Details of Changes made Signature Date It is important to let your family, carers and any professional involved in your health and social care know, so remember to keep this document safe. Page 24 of 31

Appendix 3 ADVANCE DECISION TO REFUSE TREATMENT Form B Important note for health and social professionals Any health or social care professional reading this decision to refuse treatment must check that it is valid and applies in the circumstances at the time. This decision to refuse treatment becomes legally binding and must be followed if professionals are satisfied that it is valid and applies in the circumstances at the time. However, you should not immediately assume that the patient cannot make their own decisions. They might just need help and time to communicate. You should share this information with everyone who is involved in the patient s treatment and care. This decision to refuse treatment does not prevent health or social care professionals offering or providing basic care support and comfort. Part 1 Seeking advice Before you make your decision it is recommended that you get advice from the health care professional most closely involved in your care or an organisation that can provide advice in relation to your specific condition or situation. This will help you to have all the information you need to make an informed decision. Who have you talked to about your decision to refuse treatment? (Please tick all appropriate boxes) GP Name: Nurse Name: Consultant Name: Key Worker Name: Position: Other Name: Position Page 25 of 31

Part 2 - My details Name Date of birth NHS number (or other identifier) Address and postcode Phone Email address Part 3 - My decisions I do not want to receive the specific treatments shown below. My directions apply even if my life is at risk as a result. Specific treatment I want to refuse Circumstances I want to refuse the treatment in Page 26 of 31

Part 4 - My declaration and signature Declaration- to my family, my doctor and everyone else concerned: I am making this decision to refuse treatment voluntarily and am mentally capable of doing so. I am fully aware of the potential consequences of refusing treatment, even if my life is at risk as a result. I can understand, weigh up and remember all the information relevant to this decision to refuse treatment and can explain my decision. If I become unable to make decisions about my medical care, my instructions are set out in Form B (Part 3), unless amended by any change shown in form B (Part 6) I understand that this decision to refuse treatment does not prevent health or social care professionals offering or providing basic care, support and comfort. Signature Date I understand that I can cancel this decision to refuse treatment at any time. Part 5 - Witness declaration The person making this decision to refuse treatment signed it voluntary and in front of me. Witness Name Witness Signature Date Address and postcode Contact number Email address Relationship to the person making the decision: It may be helpful to give copies of this form to health and social care professionals who are involved in your care. If you are in hospital or a hospice, you should tell the consultant or most senior doctor caring for you about this decision to refuse treatment Page 27 of 31

Part 6 Changes to your wishes You should regularly review this decision to make sure it still represents your wishes. In the following box you should make a note of any changes you want to make. Each change must be signed and witnessed and you must give your signature and the date. Make sure your GP, key worker, and any other relevant people (for example, your family, friends and any other health and social care professionals) are told about any changes. Also, if you change any of your decisions on your original documents, you must remember to also change any copies that are held elsewhere. Details of changes made Signature Date Witness`s Name Witness`s Signature Date Address and Post code Contact number Email Address Relationship to the person making the decision Page 28 of 31

Details of changes made Signature Date Witness`s Name Witness`s Signature Date Address and Post code Contact number Email Address Relationship to the person making the decision Page 29 of 31

Part 7 Letting people know your wishes It is important to let your family, carers and any professional involved in your health and social know about your choices and where to find your original document. Your family or cares may have to find it quickly if you require emergency treatment and they need tell health professional your wishes when you are unable to do so yourself, so remember to keep the original copy safe. Name Relationship to you Contact details Any Additional Information Page 30 of 31

Page 31 of 31 Appendix 4 Flow Chart