The Newcastle upon Tyne Hospitals NHS Foundation Trust

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1 The Newcastle upon Tyne Hospitals NHS Foundation Trust Advance Decision to Refuse Treatment Policy (Advanced Refusal of Treatment/ Previously known as Living Wills) Incorporating the Mental Capacity Act 2005 Version No.: 3.1 Effective From: 3 July 2013 Expiry Date: 30 June 2016 Date Ratified: 11 June 2013 Ratified By: Clinical Risk Group 1 Introduction 1.1 Patients have a fundamental legal and ethical right to determine what happens to their own bodies. Consent is a patient s agreement for a health professional to provide care. Valid consent to treatment is therefore absolutely central in all forms of healthcare, from providing personal care to undertaking major surgery. For patients with capacity, consent must be obtained as outlined in the Trust Consent Policy. 1.2 It is recognised that adults have the right to say in advance that they want to refuse treatment if they lose capacity in the future. There are a number of options open to patients in determining their future care in the event that they lose capacity to make decisions. The Clinical Networks, Deciding Right document contains details of the options available to patients. One of these options is the right to make an Advance Decision to Refuse Treatment. A valid and applicable Advance Decision to refuse treatment has the same force as a contemporaneous decision. However, this only takes effect when the person who made the Advance Decision to Refuse Treatment ceases to have the capacity to make the decision in question. Similarly, an Advance Statement may be made to express a patient s wishes, feelings, beliefs and values about future care. Unlike the Advance Decision to Refuse Treatment, an Advance Statement is not legally binding but must be taken into account by carers if the person loses capacity. Further details regarding Advance Decisions to Refuse Treatment, Advance Statements and other decisions which can be made at a time when a patient has capacity in anticipation that they may lose capacity or be too unwell to make their wishes clear to healthcare professionals are outlined under Deciding Right. 1.3 On 1 October 2007 the Mental Capacity Act 2005 (MCA) came into force. The Act defines the legal test for capacity and sets out core principles and methods of making decisions and carrying out actions in relation to personal welfare, healthcare and financial matters on behalf of those who lack capacity. The Act provides certain ways in which an individual may influence what happens to them should they ever be unable to make a particular decision in the future. For individuals over the age of 18 one of these is to make an Advance Decision to refuse treatment. Page 1 of 15

2 1.4 An Advance Decision to refuse treatment is a set of instructions from the patient to the medical team. It sets out the specific circumstances in which the patient would not want certain treatments or would want a particular treatment to be stopped. An Advance Decision to Refuse Treatment cannot be used to refuse basic care that a patient may need to keep them comfortable including for example; food, fluids or pain control. Nor can it be used to request that their life be brought to an end. 1.5 The MCA for the first time put Advance Decisions to Refuse Treatment [previously referred to as Living Wills] on a statutory footing. The MCA sets out what is required for an Advance Decision to Refuse Treatment, to be valid and applicable and introduces new safeguards. The MCA introduces particular conditions for Advance Decisions to Refuse Treatment dealing with the refusal of life-sustaining treatment, namely that they must be written, signed and witnessed and include a statement that the decision applies even if the person s life is at risk. 1.6 Some people may have made Advance Decisions to Refuse Treatment which were valid under existing common law but will not be enforceable under the MCA. 1.7 People with decision-making capacity can consider revising / remaking their Advance Decision to Refuse Treatment so that it meets the requirements of the MCA, particularly if it deals with life-sustaining treatment. Some people will, however, have lost capacity at the time the MCA came into force and so do not have this option. This means the Act has effectively disadvantaged those who have refused life-sustaining treatment and have lost capacity before it comes into force. 1.8 An understanding of the term Advanced Decision to Refuse Treatment is key in enabling staff to respond to patients requests to withhold treatment and the processes to confirm its currency and legitimacy. This policy defines what constitutes an Advance Decision to Refuse Treatment. This term replaces previous references to Advance Directives and Living Wills which are now obsolete. 1.9 This policy promotes the principle that people in contact with the Trust take an active role in planning their care and work in partnership with health and social care to achieve desired outcomes. 2 Scope 2.1 The guidance offered in this document applies to all Health Professionals in the event that they are made aware that a patient either has made an Advance Decision or requests to write one. Furthermore, guidance is provided on how to ensure an Advance Decision to Refuse Treatment is valid and what to do if the Page 2 of 15

3 3 Aims validity of an Advance Decision is in question. This policy must be read in conjunction with the Trust Jehovah s Witness Policy. There are additional requirements specific to Jehovah s Witness patients which are not outlined in this policy. The policy provides guidance for staff in supporting patients who have made or wish to make an Advance Decision to Refuse Treatment. 4 Duties (Roles and Responsibilities) 4.1 Director of Quality & Effectiveness The Director of Quality & Effectiveness has overall responsibility for ensuring that this policy is reviewed and that there are appropriate quality assurance mechanisms in place in relation to the guidance in this policy. 4.2 Admitting Nurse The admitting nurse has the responsibility for ascertaining during the completion of the admission documentation whether the patient has an Advance Decision to Refuse Treatment. 4.3 Any member of staff receiving an Advance Decision Any member of staff receiving an Advance Decision to Refuse Treatment should record in the patient s record that an advance decision has been received. 4.4 Responsible Medical Practitioners Any doctor responsible for a patient s care must respect a valid Advance Decision to Refuse Treatment relating to the patient s health care as legally binding upon any care or treatment that they can give. Doctors who have doubts about the validity of an Advance Decision should obtain advice from the Legal Services Department, who will take steps to have the validity of the Advance Decision tested, if necessary by the Court of Protection. Doctors should take Advance Statements into account and follow them where possible and in the patient s best interests. A clinician will not be held liable if s/he can prove that s/he acted in the patient s best Interests and has taken all reasonable steps it find out if an Advance Decision exists. If the clinician has a reasonable belief that an Advance Decision exists and that it is valid and applicable, s/he may be held to legally liable if acting in contravention of the Advance Decision to Refuse Treatment. 4.5 Other Health Care Professionals Any professional with direct responsibility for a patient or for an aspect of the patient s care and treatment must also respect Advance Decisions to Refuse Treatment and take Advance Statements into account as defined above for doctors. Page 3 of 15

4 Additionally other health professionals should often take the lead in establishing whether an Advance Decision/statement exists and in documenting it on the care plan. Sometimes it may be part of a health professional s duty of care to help and support a service user in drawing up an Advance Decision to Refuse Treatment. 4.6 Where there is a major difference of opinion relating to Advance Decision to Refuse Treatment legal advice must be sought. The matter may be referred to the Court of Protection. 5 Definitions 5.1 An Advance Decision to Refuse Treatment is a statement made by a mentally competent person aged over 18 years, which defines in advance their refusal of medical treatment should they become mentally or physically incapable of making their wishes known. An example of an Advance Decision is available as Appendix Advance Statements may be made to express patients wishes, feelings, beliefs and values about future care. Unlike the Advance Decision, an Advanced Statement is not legally binding but must be taken into account if the person loses capacity. Advance statements may be made verbally or in writing. 5.3 The MCA provides that Advance Decisions to Refuse Treatment are legally binding provided they fulfil the legal requirements of being valid and are applicable to the particular treatment in question. 5.4 An Advance Decision to Refuse Treatment is only valid and applicable if; The person who made it was over 18 years old and had the capacity to make the decision at the time it was made. This means they must be able to; a) understand information about the procedure or course of treatment b) retain information in their mind c) use or weigh that information as part of the decision-making process d) communicate their decision. The service user has not withdrawn it either verbally or in writing. A Lasting Power of Attorney has not been completed subsequent to the Advance Decision being made (in which case the LPA has priority in relation to what treatment is given or withheld). The service user has done nothing inconsistent with it remaining as their fixed position (e.g. by taking a treatment voluntarily that they objected to in the Advance Decision to Refuse Treatment) It must be applicable to the treatment in question. It should clearly refer to the treatment in question and it should explain in which circumstances the refusal is to apply. If there have been changes in the circumstances which there are reasonable grounds for believing would have affected a person s Advance Decision to Refuse Treatment when they made it, then it may not Page 4 of 15

5 Individuals cannot make an Advance Decision to Refuse Treatment for treatment they want, but only for those treatments they do not want. It may be expressed in layman s terms and can be made verbally or in writing, with the exception of decisions to refuse life sustaining treatment which must be in writing. Where the Advance Decision to Refuse Treatment is to refuse life sustaining treatment it must: - be in writing, which includes being written on the person s behalf or recorded in their medical notes - be signed by the maker in the presence of a witness who must also sign the document. It can also be signed on the maker s behalf at their direction if they are unable to sign for themselves - be verified by a specific statement made by the maker, either included in the document or a separate statement, which states that the advance decision is to apply to the specified treatment even if life is at risk. If there is a separate statement this must also be signed and witnessed. Any specified circumstances stated to apply before the Advance Decision to Refuse Treatment takes effect actually do apply. 5.4 Advance Decisions to refuse treatment cannot be used to; ask for anything illegal, for example, euthanasia demand Healthcare teams to consider inappropriate care refuse the offer of food or drink refuse the use of measures designed solely to maintain comfort for example; pain relief, warmth, shelter refuse basic nursing care aimed at providing comfort for example; bathing or mouth care ask for treatment, they are only to identify treatments the individual does not want excluding those listed above 5.5 An Advance Decision to refuse treatment is invalid when the person has withdrawn the decision while still having capacity to do so after making the Advance Decision, the person made a Lasting Power of Attorney (LPA) for Personal Welfare (Health & Welfare) giving a person or persons authority to make the same treatment decisions the person has done something that clearly goes against the Advance Decision to Refuse Treatment which suggests that they have changed their mind the person has been detained under the Mental Health Act and requires emergency psychiatric treatment. Page 5 of 15

6 5.6 An Advance Decision to a refuse treatment is not applicable when; the proposed treatment is not the treatment specified in the Advance Decision to Refuse Treatment the circumstances are different from those that have been set out in the Advance Decision to Refuse Treatment there are reasonable grounds for believing that there have been changes in circumstances, which would have affected the decision if the person had known about them at the time they made the Advance Decision to Refuse Treatment eg significant advances in medical treatment. 5.7 When an Advance Decision to Refuse Treatment is not valid or applicable to current circumstances: The healthcare professionals must consider the ADRT as part of their assessment of the person s best interests if they have reasonable grounds to think it is a true expression of the person s wishes. They must not assume that because an Advance Decision to Refuse Treatment is either invalid or not applicable, that they should always provide the specified treatment (including lifesustaining treatment) they must base this decision on what is in the person s best interests. 5.8 Patients detained under the Mental Health Act: Where patients are detained under the Mental Health Act, they can be given a treatment that they have previously refused by an Advance Decision to Refuse Treatment. When proposing treatment for patients detained under the Mental Health Act, legal advice should be sought through the Trust s Legal Services Department when there is an Advance Decision to Refuse Treatment. 5.9 Assistance for Trust staff in ascertaining whether an Advanced Decision to Refuse Treatment is valid; See Appendix 2 Flowchart How to check an Advance Decision to Refuse Treatment is valid Deciding Right document If still unclear please contact the Legal Services or Safeguarding team for assistance 6 Patients requesting to make an Advanced Decision 6.1. It is preferable for patients to make an Advance Decision prior to admission to hospital. The opportunity to make an Advance Decision should not be actively offered to patients in contact with the Trust. This is because patients might feel that undue pressure is being brought to bear on them if the Advance Decision is actively promoted, potentially undermining the patient s trust in their hospital carers. It is recognised, however, that there may be circumstances when a patient wishes to make or amend an Advance Decision whilst in hospital for treatment. Page 6 of 15

7 6.2 If a patient, whilst under the care of Newcastle upon Tyne Hospitals NHS Foundation Trust, asks a member of staff about making an Advance Decision to Refuse Treatment, the patient should be advised to seek independent advice / counselling and preferably advised to seek legal help from their own solicitor. Discussion about Advance Decision must be approached in a sensitive manner 6.3 Medical staff must be notified of a patient s request and an appropriate entry must be made in the patient s clinical record. 6.4 If the patient does not have a solicitor, they should be advised that the hospital can contact a solicitor to assist in drawing up an Advance Decision to Refuse Treatment. The patient should also be advised that legal fees for this will be charged to the patient. Where assistance is needed in contacting a solicitor, authorisation should be obtained from the Patient Services Director or Senior Manager on-call. 6.5 It is the patient s own responsibility to draft an Advance Decision to Refuse Treatment, and it is recommended that this be done with medical advice and counselling as part of a continuing doctor / patient dialogue, even though patients have a legal right to decline specific treatment, including life-prolonging treatment. Whilst the document needs to be drawn up by the patient, preferably with advice from their doctor, the legal format is important and so the patient should also seek the advice of a solicitor. 6.6 Should it be necessary for a Trust employee to witness an Advance Decision to Refuse Treatment this role should be undertaken by a Consultant who is not directly involved in the care of the patient, or by a Senior Manager. 6.1 Guidelines for producing an Advance Decision Detailed records should be kept by staff of all discussions concerning a patient s wish to make an Advance Decision to Refuse Treatment The physical and mental capacity of the patient at the time the Advance Decision to Refuse Treatment is made should be recorded by a suitably medically qualified person so that there is positive evidence of the patient s capacity at the time Opportunity should then be provided for the patient to discuss the Advance Decision to Refuse Treatment in detail with their clinician. This should begin with a general discussion about the patient s values and beliefs before particular decisions are made. It may be necessary for discussions about the Advance Decision to Refuse Treatment to take place over several meetings and also to involve other family members or carers at the patient s request. Where the patient does not wish to involve family or carers, this wish should be respected and staff should ensure that the Page 7 of 15

8 patient s autonomy is safeguarded. All consultant medical staff should, in principle, be prepared to respond to a patient s request for discussion of an Advance Decision, referring to other colleagues as necessary where the discussion falls outside their current competence The Advance Decision to Refuse Treatment should be drafted in clearly understandable language and should be witnessed by independent persons. The form attached to this policy should be completed in all instances (Appendix 1). Explanation of the form should always be available for the patient prior to its completion Care must be taken to ensure that the patient is not subjected to influence from persons who have a conflict of interest and who may stand to benefit from the patient s death or who wish to impose their views or values on the patient. Views of relatives can be taken into account but must not be allowed to overrule the patient s stated wishes and the patient s best interests Where there are cases of difficulty, a declaration may need to be obtained from the Court of Protection as to whether the Advance Decision to Refuse Treatment should be followed. It is essential that legal advice be obtained in cases of difficulty No person has a legal right to accept or decline treatment on behalf of another adult unless a formal Lasting Power of Attorney (Welfare) has been completed and registered with the Office of the Public Guardian. For further information see the Lasting Power Of Attorney Policy At such time as a decision has to be made as to whether to comply with the wishes of the patient as expressed in an Advance Decision to Refuse Treatment, it is essential that a relevant health professional determines whether the patient s clinical circumstances are significantly different from those envisaged when the Advance Decision to Refuse Treatment was signed. Steps must be taken to ensure that the patient has not changed his/her mind between making the Advance Decision to Refuse Treatment and the decision by health professionals to act upon it. This is particularly important where there has been significant change in the patient s medical condition or circumstances, or a long time has elapsed since making the Advance Decision to Refuse Treatment; also where there has been any important medical development relevant to the patient s condition or treatment All discussions about an Advance Decision to Refuse Treatment should be clearly, contemporaneously and accurately recorded in the patient s clinical notes. Page 8 of 15

9 7 Training The Trust includes Advance Decision training as part of the mandatory online breeze training package Mental Capacity Act Equality and Diversity The Trust is committed to ensuring that, as far as is reasonably practicable, the way we provide services to the public and the way we treat our staff reflects their individual needs and does not discriminate against individuals or groups on any grounds. This policy has been properly assessed. 9 Monitoring Compliance Standard/process/issue Monitoring and audit Method By Committee Frequency Patients have the right under the MCA to develop Advanced Decisions and for these to be honoured. Minutes of MCA steering group including activity data MCA Lead MCA steering group Quarterly submitted Integrated Governance Report 10 Consultation and Review Patient Safety and Risk Lead Clinical Risk Group Quarterly This policy has been reviewed with reference to the documents listed in section Implementation (including raising awareness) Mandatory training regarding advanced decisions is available for all staff. 12 References The Clinical Network (2012) Deciding Right Mental Capacity Act (2005) London. HMSO 13 Associated Documentation Deciding Right Jehovah s Witness Policy Lasting Power of Attorney Policy Mental Capacity Act 2005 Page 9 of 15

10 Example Advanced Decision to Refuse Treatment Appendix 1 Page 10 of 15

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14 Flowchart How to check an Advance Decision to Refuse Treatment is valid Appendix 2 Page 14 of 15

15 THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST IMPACT ASSESSMENT SCREENING FORM A This form must be completed and attached to any procedural document when submitted to the appropriate committee for consideration and approval. Policy Title: Advance Decision to Refuse Treatment Policy (Advanced Refusal of Treatment/ Previously known as Living Wills) Incorporating the Mental Capacity Act Does the policy/guidance affect one group less or more favourably than another on the basis of: Policy Author: Yes/No? Race No Karen Collingwood, Nurse Specialist, Patient Safety You must provide evidence to support your response: This policy will not affect one group more or less favourably on grounds of race, ethnic origin, nationality, gender, culture, religion or belief, sexual orientation, age or disability. Ethnic origins (including gypsies and travellers) No Nationality No Gender No Culture No Religion or belief No Sexual orientation including lesbian, gay and bisexual people No Age No Disability learning difficulties, physical disability, sensory impairment and No mental health problems. 2. Is there any evidence that some groups are affected differently? No 3. If you have identified potential discrimination, are any exceptions valid, legal N/A and/or justifiable? 4(a). Is the impact of the policy/guidance likely to be negative? (If yes, please No answer sections 4(b) to 4(d)). 4(b). If so can the impact be avoided? N/A 4(c). What alternatives are there to achieving the policy/guidance without the N/A impact? 4(d) Can we reduce the impact by taking different action? N/A Comments: Action Plan due (or Not Applicable): N/A Name and Designation of Person responsible for completion of this form: Karen Collingwood, Nurse Specialist, Patient Safety Date: 28/05/13 Names & Designations of those involved in the impact assessment screening process: Karen Collingwood, Nurse Specialist, Patient Safety (If any reader of this procedural document identifies a potential discriminatory impact that has not been identified on this form, please refer to the Policy Author identified above, together with any suggestions for the actions required to avoid/reduce this impact.) Page 15 of 15