The Decision to Withdraw Implantable Cardioverter Defibrillator (ICD) Therapy in an Adult Patient

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1 Policy Number LCH-148 This document has been reviewed in line with the Policy Alignment Process for Liverpool Community Health NHS Trust Services. It is a valid Mersey Care document, however due to organisational change this FRONT COVER has been added so the reader is aware of any changes to their role or to terminology which has now been superseded. When reading this document please take account of the changes highlighted in Part B and C of this form. Part A Information about this Document Policy Name The Decision to Withdraw Implantable Cardioverter Defibrillator (ICD) Therapy in an Adult Patient Policy Type Board Approved (Trust-wide) Trust-wide Divisional / Team / Locality Action No Change Minor Change Major Change New Policy No Longer Needed Approval As Mersey Care s Executive Director / Lead for this document, I confirm that this document: a) complies with the latest statutory / regulatory requirements, b) complies with the latest national guidance, c) has been updated to reflect the requirements of clinicians and officers, and d) has been updated to reflect any local contractual requirements Signature: Date: Part B Changes in Terminology (used with Minor Change, Major Changes & New Policy only) Terminology used in this Document New terminology when reading this Document Part C Additional Information Added (to be used with Major Changes only) Section / Paragraph No Outline of the information that has been added to this document especially where it may change what staff need to do Part D Rationale (to be used with New Policy & Policy No Longer Required only) Please explain why this new document needs to be adopted or why this document is no longer required Part E Oversight Arrangements (to be used with New Policy only) Accountable Director Recommending Committee Approving Committee Next Review Date LCH Policy Alignment Process Form 1

2 SUPPORTING STATEMENTS This document should be read in conjunction with the following statements: SAFEGUARDING IS EVERYBODY S BUSINESS All Mersey Care NHS Foundation Trust employees have a statutory duty to safeguard and promote the welfare of children and adults, including: being alert to the possibility of child / adult abuse and neglect through their observation of abuse, or by professional judgement made as a result of information gathered about the child / adult; knowing how to deal with a disclosure or allegation of child / adult abuse; undertaking training as appropriate for their role and keeping themselves updated; being aware of and following the local policies and procedures they need to follow if they have a child / adult concern; ensuring appropriate advice and support is accessed either from managers, Safeguarding Ambassadors or the trust s safeguarding team; participating in multi-agency working to safeguard the child or adult (if appropriate to your role); ensuring contemporaneous records are kept at all times and record keeping is in strict adherence to Mersey Care NHS Foundation Trust policy and procedures and professional guidelines. Roles, responsibilities and accountabilities, will differ depending on the post you hold within the organisation; ensuring that all staff and their managers discuss and record any safeguarding issues that arise at each supervision session EQUALITY AND HUMAN RIGHTS Mersey Care NHS Foundation Trust recognises that some sections of society experience prejudice and discrimination. The Equality Act 2010 specifically recognises the protected characteristics of age, disability, gender, race, religion or belief, sexual orientation and transgender. The Equality Act also requires regard to socio-economic factors including pregnancy /maternity and marriage/civil partnership. The trust is committed to equality of opportunity and anti-discriminatory practice both in the provision of services and in our role as a major employer. The trust believes that all people have the right to be treated with dignity and respect and is committed to the elimination of unfair and unlawful discriminatory practices. Mersey Care NHS Foundation Trust also is aware of its legal duties under the Human Rights Act Section 6 of the Human Rights Act requires all public authorities to uphold and promote Human Rights in everything they do. It is unlawful for a public authority to perform any act which contravenes the Human Rights Act. Mersey Care NHS Foundation Trust is committed to carrying out its functions and service delivery in line the with a Human Rights based approach and the FREDA principles of Fairness, Respect, Equality Dignity, and Autonomy

3 The Decision to Withdraw Implantable Cardioverter Defibrillator (ICD) Therapy in an Adult Patient Version 2.0 : Author : Cheshire and Merseyside Complex Cardiac Device Subgroup Review date : May 2016 Approved Date : May 2014

4 Document Purpose Title To provide a common care pathway process at End of Life for all patients with Implantable Cardioverter Defibrillator (ICD) with in Cheshire and Merseyside. The Decision to Withdraw Implantable Cardioverter Defibrillator (ICD) Therapy in an Adult Patient Description This policy is to guide and support all staff involved in the decision to withdraw ICD therapy in an adult patient at their end of life, and to ensure the effective management of the patients care throughout the pathway of end of life. Author Cheshire and Mersey Cardiac Device Leads Group Approved Date April 2014 Effective Date May 2014 Review Date May 2016 Target Audience General Practitioners, Community Practice Nurses, District Nurses, Community Matrons, Community Heart Failure Nurse Specialists, Consultant Cardiologists, Cardiology Medical staff, Heads of Nursing, Cardiac Physiologists, Director of Operations, and other staff who are responsible for identifying and caring for patients with ICD in situ. Circulation This policy should be made easily accessible available for healthcare professionals on the Cheshire and Mersey Cardiac & Stroke Network website. Superseded Documents The Decision to Withdraw Implantable Cardioverter Defibrillator (ICD) Therapy in an Adult Patient 2007 Action Required All partners within the Cheshire and Mersey Clinical Network are required to adopt and utilise this policy.

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6 CONTENTS Section Page no. Algorithm 1: The Decision to Withdraw Implantable Cardioverter 2 Defibrillator (ICD) Therapy in a Competent Adult Patient Algorithm 2: The Decision to Withdraw Implantable Cardioverter 4 Defibrillator (ICD) Therapy in an Adult Patient that Lacks Capacity The Decision to Withdraw ICD Therapy in an Adult Patient 6 Explanatory Notes Appendix to Explanatory Notes Further Information on the Mental Capacity Act 2005: Advance 12 Decision and Lasting Power of Attorney Algorithm 3: Procedure to Deactivate Device after Decision to 14 Withdraw ICD Therapy Pro-forma Record of Decision to Withdraw Implantable Cardioverter 15 Defibrillator (ICD) Therapy in an Adult Patient

7 Verify patient s device is ICD The patient is fitted with an ICD. Patient and those close to him/her are given information (oral and written) on the withdrawal of ICD therapy when nearing the end of life. Every Patient has now counselling about ICD switch off at end of life. The patient is nearing the end of life. Assessment of patient s condition, likely prognosis and treatment options undertaken by Health Care Professional involved in their care either alone or part of multidisciplinary team. Assessment of patient s capacity, to make decision about deactivation.

8 Patient lacks capacity Competent Patient treatment options including the anticipated benefit and burden of continuing ICD therapy are discussed with him/her. Please see Algorithm 2 Patient consents to withdrawal of ICD therapy Patient wished ICD therapy to continue Decision to withdraw ICD therapy is documented in their medical notes. Check discussion of deactivations performed with patient and consent gained from patient for deactivation. Decision communicated throughout the patient s care team. Suitable handover arrangements put in place for care plans including advice not to resuscitate patient. Personal support given to both patient and those close to him/her. Education / Peer Review is supplied to patients about End of Life process. Reviewed at timely intervals. Contact ICD Department at the LHCH either between 9am-5pm or the out of hours Cardiology SpR via main hospital switchboard to arrange deactivation of ICD. Decision reviewed at appropriate intervals. Care plan reassessed to ensure treatment goals remain appropriate for the patient. Patient consulted throughout and second opinion obtained if patient s condition does not progress as expected.

9 ALGORITHM 2: DECISION TO WITHDRAW ICD THERAPY IN AN ADULT PATIENT WHO LACKS CAPACITY TO MAKE DECISION Patient lacks capacity to make decision No advance decision, no lasting power of attorney and no person whom it is practicable or appropriate to consult No advance decision, no Lasting Power of Attorney, doctor in charge consults those close to the patient re If failure to reach consensus on patient s best interests seek second opinion. Consensus that in best interests to withdraw ICD therapy Registered Attorney appointed under Lasting Power of Attorney (LPA) to consent to withdrawal of ICD therapy Patient has made an advance decision on withdrawal of ICD therapy, which is valid and applicable to current PCT/Trust has a duty to provide the patient with access to an Independent Mental Capacity Advocate (IMCA) Attorney wishes ICD therapy to continue Attorney consents to withdrawal of ICD therapy

10 Contact Liverpool Heart and Chest Hospital for case discussion at Multidisciplinary team meeting If concerned that attorney not acting in patient s best interests / unethical to continue therapyseek legal advice Continue therapy until no longer ethical to do so. Decision to withdraw ICD therapy is documented in their medical notes. Check discussion of deactivations performed with patient and consent gained from patient for deactivation. Decision communicated throughout the patient s care team. Suitable handover arrangement put in place for care plans including advice not to resuscitate patient. Personal support given to both patient and those close to him/her. Hospital cardiac physiology department contacted to arrange deactivation of ICD. Download data Decision reviewed at appropriate intervals. Care plan reassessed to ensure treatment goals remain appropriate for the patient. Carer consulted throughout and second opinion obtained if patient s condition does not progress as expected.

11 The Decision to Withdraw ICD Therapy in an Adult Patient: Explanatory Notes 1. Introduction A patient is implanted with a cardioverter defibrillator (ICD) to prevent sudden cardiac death due to certain life-threatening arrhythmias. Sometimes a cardioverter defibrillator is combined with a cardiac resynchronisation therapy (CRT-D) device. The device senses continuously until an arrhythmia is recognised, at which time a shock is delivered to the heart. As a patient with an ICD is diagnosed with advanced disease, often non-cardiac related, and is in the last days of life, it may no longer be appropriate for these shocks to continue being delivered to the heart. The Decision The decision to withdraw ICD therapy must be made by the health care professional (HCP) in charge of the patient care in consultation with the multidisciplinary team and having first obtained a competent patient s consent. If the patient lacks the capacity to consent the HCP must consider whether there is a valid and applicable advance decision in force and/or whether there is an attorney who has been appointed under a Lasting Power of Attorney (LPA) who can give consent to the withdrawal. If neither is in place the decision must be made on the basis of the patient s best interests, having first complied with the statutory duty to consult those close to the patient, and those with a proper interest in their welfare e.g. anyone providing care to the patient on an unpaid basis. There is a statutory duty to consult unless it is not practical or appropriate to do so. If there is no-one with whom it is practical and/or appropriate to consult, an Independent Mental Capacity Advocate (IMCA) must be consulted instead, and their view taken into account before a decision on best interests is reached. These notes and the algorithms to which they relate provide advice to all involved and in particular, to the HCP in charge who must record in the patient s notes. The advice is based on the General Medical Council s guidance - Treatment and Care Towards the End of Life: Good Practice in Decision Making 2010, Best Interest Decision Making Document, supplemented by advice contained in Decisions Relating to Cardiopulmonary Resuscitation, a Joint Statement from the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing 2007, endorsed by the Department of Health. Legal advice has also been taken to ensure compliance with the provisions of the Mental Capacity Act 2005 and the Mental Capacity Act Code of Practice 2007 Final edition. 2. Deactivation of ICD Devices The deactivation of an ICD requires specific competence and within the Cheshire and Merseyside area, cardiac physiologists have been trained to carry out this procedure either as a permanent deactivation or as a temporary switch-off in the case, for example, of a patient undergoing elective surgery. 3. Information to be Given to Patient at the Time of Implant This information should explain to the patient that there might come a time when their ICD should be deactivated. The information should describe the objectives of the ICD and that when the end of life approaches ICD therapy may no longer be appropriate. 6

12 The patient s views should be canvassed, and noted. If the patient wishes to make a specific advance decision to stipulate a wish that the ICD be de-activated at a certain point, this should be carefully recorded in the format described in the appendix. The patient should be encouraged to notify relevant parties about the advance decision e.g. GP/close family and friends, and reasonable steps should be taken to ensure it will come to the attention of those treating the patient in the future. 4. Is the Patient Nearing the End of Life? This question could be raised by the patient, a member of the family or a member of their care team. The fact that the patient is being placed on the Gold Standards Framework Register or as part of Advanced Care Planning discussions might also prompt it. 5. HCP in Charge of Patient s Care The HCP in charge of the patient s care could be any professional in actual contact with patient s care plan in another speciality. It is the HCP who is currently co-ordinating any care or treatment that the patient is receiving. If the patient is receiving primary / community care this HCP is likely to be the patient s GP. If the patient is in hospital, it is likely to be the treating consultant. The HCP in charge is responsible for assessing and monitoring the patient s condition, likely prognosis and treatment options. They must take account of current guidance on good clinical practice and the views and assessments of the multidisciplinary team, and consider if a second opinion is necessary or would be helpful in a particular case. They are responsible for taking the decision to withdraw ICD therapy subject to all the checks and balances outlined in this guidance. The HCP documents in patient s notes. 6. Multidisciplinary Team The multidisciplinary team consists of all members of staff involved with the patient s care/treatment. This group may include GP, consultant(s), and palliative care team, specialist nurse in heart failure, district/home/ward nurse and social worker. The team should be involved with the assessment of the patient to incorporate all aspects of the patient s condition, prognosis, treatment and care in liaison with the doctor in charge. 7. Second Opinion The HCP in charge should consider seeking a second opinion (e.g. GP, Cardiologist) where, for example, the patient's condition is complex or is not progressing as expected or where clinical scenarios change and it may become necessary to change/restart treatment that has been withdrawn. It must be recognised that patients might change their minds about decisions. A second opinion may also be useful where the position regarding the patient s capacity is in doubt or where the views of the HCP in charge regarding capacity are challenged. A consultant cardiologist at the local hospital can be contacted for further advice. 7

13 8. Discussion with Patient The HCP in charge should always discuss matters with the patient, whether or not the patient is competent, unless the patient is unwilling or unable to engage in discussions. The discussion must be sensitive to the patient s needs and their current situation. Sufficient time should be taken to consider all aspects of the patient s care requirements. The patient may wish to involve those close to them or their religious or spiritual adviser, which should be accommodated wherever possible. However, if the patient does not wish to know all the details of their condition, their wishes should be respected as far as possible, whilst still ensuring that the patient is provided with sufficient information to provide informed consent to withdrawal of treatment. 9. Competent Patient Adult patients (above 18) are presumed to be competent to make decisions about their own health care, unless there is evidence to the contrary. This means they have the right to decide how much weight to attach to the benefits, burdens, risks, and the overall acceptability of any treatment. In short, they have the legal right to refuse treatment, even life-sustaining treatment, provided they are competent and their decision is informed, i.e. they understand fully its consequences. Adult patients can, whilst they have capacity to make their own decisions, express their wishes about treatment which is proposed in the future at a time when they will have lost capacity to make decisions. This is done by making an advance decision to refuse specific types of treatment. 10. Patients between the ages of years old Patient and family consultation. if any concerns seek legal advice. 11. Patients Who May Lack Capacity The Mental Capacity Act (MCA) sets out five statutory principles of capacity which are legally binding from 1st October Anyone providing care and treatment to someone who may lack capacity must apply these principles and have regard to the relevant parts of the Code of Practice: Every adult is presumed to be competent and therefore has the right to make their own decisions, and for those decisions to be respected, unless it can be established that they in fact lack the requisite capacity; A person must be given all appropriate help (e.g. communication aids/specialist support) to make their own decision before it is concluded that they are incapable of making their own decisions; Individuals must retain the right to make what might be seen as eccentric or unwise decisions without this prompting assumptions that they may lack capacity; Anything done for or on behalf of a person without capacity must be in their best interests; When deciding what is in the person s best interests, consideration must be given to whether the desired aim can be achieved by different means, which are likely to be less intrusive/restrictive of the person s basic rights and freedoms. 8

14 Evidence that a patient may not have capacity should be carefully assessed. Test for Capacity To determine if a person lacks capacity to make particular decisions, MCA sets out a two-stage test of capacity: Stage 1: Does the person have an impairment of, or a disturbance in the functioning of, their mind or brain? Stage 2: If so, does the impairment or disturbance mean that the person is unable to make a specific decision when they need to? The Act defines a person as unable to make a decision if they cannot: a) Understand the information relevant to the decision (A person will not be deemed unable to understand the relevant information if they can understand an explanation of it given in a way that is appropriate to their circumstances, using simple language, visual aids etc.); b) Retain that information (For a period long enough to make the decision in question) c) Use or weigh that information as part of the decision-making process; or d) Communicate their decision (By talking, using sign language or any other means). If a person cannot do any one or more of the above, they can be assumed to lack capacity. The decision must be made freely without the person being under pressure to reach a particular conclusion such as they effectively have no choice about the decision. 12. Decision Making Where Patient Lacks Capacity Where an adult patient does not have capacity at the material time to give/withhold consent for the particular action proposed, it should be considered whether: a) There is a valid and applicable advance decision in force, which is relevant to the decision to withdraw ICD therapy. (See appendix for further details.) b) There is an attorney who has been appointed under a Lasting Power of Attorney (LPA) who must act in the patient s best interests and can give or refuse consent to the proposed action. (See appendix for further details.) If there is both an advance decision and an LPA and these are contradictory, the most recent takes priority, but second opinion could be sought. If the HCP in charge is concerned that the attorney appointed under the LPA is not acting in the patient s best interests or it is unethical to continue therapy, legal advice 9

15 should be sought. If there is no valid and applicable advance decision and no attorney appointed under an LPA to give or refuse consent, the decision must be made on the basis of best interests. (See Note 13 below.) 13. Best Interests HCPs have a duty to provide treatment to those lacking capacity where that treatment is deemed to be in the patient s best interests. Where adult patients lack capacity to decide for themselves, an assessment of the benefits, burdens and risks, and the suitability of the proposed treatment vis-à-vis other options, including no treatment at all, must be made on their behalf by the HCP in charge, in consultation with the multidisciplinary team. The HCP should discuss matters with the patient and take account of their wishes, where they are known. There is also a statutory duty to consult with those close to the patient unless it is not practical or appropriate to do so. Case law has established that best interests means more than just best medical interests; it includes considering all aspects of the individual s life relevant to the decision in question e.g. religious, cultural, political beliefs and values, social, emotional, psychological and personal issues/preferences. From 1st October 2007, health and social care professionals are obliged to consider the statutory principles of capacity and the best interests checklist in Section 4 of the Mental Capacity Act (MCA) and the relevant parts of the Code of Practice when determining what may be in a patient s best interests. 14. Consultation In order to reach a decision about best interests, it has always been good practice for the HCP in charge to consult people close to the patient (family, friends, carer etc.) bearing in mind the patient s own views about family involvement. Under the MCA, this becomes a statutory obligation unless it is not appropriate or not practicable to do so. In order to reach a consensus opinion the HCP and multi-disciplinary team must explore all options and acknowledge issues raised by those close to the patient when discussing the issue. It is important that sufficient time is taken over this process to ensure that all issues have been fully examined and all the relevant people have been involved and notified. Where it is not clear that it is in best interests to withdraw the ICD, or where family or friends are strongly opposed to the proposed decision or where significant restraint might be required, a second opinion should be sought as to whether it is appropriate to apply to court for a declaration on best interests. Where consultation is not appropriate/ practicable, the reasons should be documented carefully in the patient s notes, in case of future query. In these circumstances, if it is proposed to withdraw ICD therapy, the CCGT/Trust has a duty to provide the patient with access to an (IMCA). The advocate s role will be to support and represent the patient in the decision-making process but the ultimate decision as to best interest s 10

16 remains with the HCP in charge. (See Note 15 below.) 15. Role of the Independent Mental Capacity Advocate The MCA requires NHS bodies to instruct an Independent Mental Capacity Advocate (IMCA) in all cases where serious medical treatment such as the withdrawal of ICD therapy is proposed and the patient lacks capacity and there is no-one whom it is appropriate or practicable to consult. The IMCA s role is to be consulted about whether what is proposed is in the patient s best interests and to represent the views of the patient. Emergency treatment should never be delayed awaiting IMCA support. Therefore, it will be lawful to provide any serious medical treatment required as an emergency, without the involvement of an IMCA, provided the treatment given is in the patient s best interests, under the common law doctrine of necessity. This exception from the need for IMCA involvement is unlikely to ever be applicable to a decision to withdraw ICD therapy, as it is hard to imagine how the need to withdraw the ICD could be an emergency in itself. IMCAs have a statutory right to access/take copies of relevant parts of the patient s medical notes to assist them in assessing best interests and will usually consult the professionals involved in the patient s care and any significant others. The IMCA will usually provide a report with their conclusions. The HCP in charge has a duty to consider these conclusions in reaching a decision about what is in the patient s best interests. They remain responsible for the decision, and are not bound to follow the IMCA s conclusions, provided the IMCA s views have been considered. 16. Recording the Decision The HCP in charge must ensure that the decision is documented in the patient s notes. The following must be included: the relevant clinical findings; details of discussions with the patient, multidisciplinary team and those close to the patient or the IMCA; details of treatment given with any agreed review dates; outcomes of treatment or other significant factors which may affect future care. The information should be recorded at the time of, or soon after, the events described. The record should be legible, clear, accurate and unambiguous, for example avoiding abbreviations or other terminology that may cause confusion to those providing care. Reference to the completion of The Decision to Withdraw Implantable Cardioverter Defibrillator (ICD) therapy in an Adult Patient should be made in the patient s case notes. The pro-forma/ case notes should be appropriately accessible to the patient, team members and others involved in providing care to the patient. 17. Communicating the Decision Whatever decision is made, the HCP in charge must do their best to ensure that all those consulted, and especially those responsible for delivering care, are consistently informed of the decision and are clear about the goals and the agreed care plan. They 11

17 should check that hand-over arrangements between professional and other carers include suitable arrangements for passing on the information. It is particularly important that everyone involved is clear about the arrangements for providing appropriate care in the last days of life. The doctor should discuss what the role of the family or other carers will be; what religious, spiritual or other personal support the patient might need; and what support the patient and those close to the patient will receive from them or the multi-disciplinary team. The HCP should bear in mind that, in circumstances where individuals may be under stress, any important information provided verbally might need to be reinforced in writing. 18. Reviewing the Decision The HCP must review their decision at appropriate intervals to determine whether the goals of treatment or the care plan remain relevant in the patient's present condition and remain in the patient s best interests. In doing so, they should talk to the patient where possible, and consult those involved in the patient's care. They should consider seeking a second opinion where, for example, the patient's condition is not progressing as expected. Clinical scenarios may change and it may become necessary to restart treatment that has been withdrawn. The HCP should bear in mind also that the patient might change their mind about the decision. 12

18 Appendix FURTHER INFORMATION ON THE MENTAL CAPACITY ACT 2005: ADVANCE DECISION AND LASTING POWER OF ATTORNEY 1. Advance Decision A valid advance decision to refuse the continuation of ICD therapy in specific circumstances is legally binding upon health professionals once the individual no longer has capacity to give/refuse consent to treatment. For the advance decision to be valid the person must have been over 18, and competent, when they made it. It must be clear what treatment is being refused and in what circumstances. In order for it to be applicable, it must be clear that the advance refusal was intended to apply in the specific circumstances that have arisen and there must be no reason to believe that the patient later changed their mind, whilst still competent, or that there has been a material change in circumstances since the advance decision was made which would be likely to impact upon the person s decision to refuse treatment. e.g. significant change in lifestyle/circumstances or medical science. Any advance decisions made after 1st October 2007 which involve the refusal of life-sustaining treatment must comply with certain formalities under the Mental Health Capacity Act (MCA). The decision must be in writing, must include a statement that the refusal of treatment is to apply even if life is at risk and must be signed by the patient (or someone authorised to sign on the patient s behalf and in their presence) and witnessed by a third party. NB: Any advance decision to refuse life-sustaining treatment made before 1st October 2007, provided it is otherwise valid and applicable, will not need to comply with the above formalities if there is a reasonable belief that the person who made the decision has been incapacitated since 1st October For those who have made advance decisions before 1st October 2007, which do not comply with the formalities, they will not be valid, if the person retains capacity after that date. In other words, those who are still capable of making a fresh advance decision after 1st October 2007, compliant with the MCA provisions, will need to do so, as their earlier advance decision will not be legally binding. 2. Lasting Power of Attorney From 1st October 2007, the Lasting Power of Attorney (LPA) is introduced by the MCA. Under the new legislation, a person can make two different types of LPA: 1.) Personal Welfare LPA which allows a person to appoint an attorney to make decisions about their personal welfare if and when they lose capacity to make these decisions in the future. Subject to the wording of the LPA document, this can include authority to give/refuse consent to treatment, decisions about where to live/who to have contact with. 13

19 2.) Financial LPA which authorises an attorney to deal with the person s property/financial affairs. This can operate whilst the individual still has capacity to manage their affairs, if preferred, and as specified in the LPA document. Health and social care staff have a duty to consider the relevant parts of the Code of Practice to the Mental Capacity Act (including Chapter 7), when dealing with LPAs. Where an individual states that they are an attorney, a copy of the document authorising them to act (the Lasting Power of Attorney) should be requested. For this to be valid it must have been made whilst the patient had the capacity to make it and must have been registered with and stamped by the Office of the Public Guardian. It must also include authority for the attorney to make decisions in relation to consent to treatment. An attorney will only have authority to consent to withdrawal of ICD therapy if the Lasting Power of Attorney specifically authorises decisions concerning life-sustaining treatment. Attorneys are bound by the principles of the MCA i.e. they must apply the principles of capacity and must act in the person s best interests at all times. An Enduring Power of Attorney (EPA) does not confer any decision-making powers on the attorney in relation to consent to treatment or care. It relates solely to decision-making regarding financial affairs of the person lacking capacity. No new EPAs can legally be made after 1st October 2007 although those made before that date will continue to be valid, provided they have been registered at the Court of Protection and bear the Court seal. 3. Where there is both an advance decision and Lasting Power of Attorney (LPA) If the advance decision was made before the LPA, and the LPA clearly authorises decision-making by the attorney about this issue, the advance decision will not be valid and applicable. If that is the case, the attorney will have the decision-making power and must act in the patient s best interests. If the attorney does not regard the withdrawal of treatment as being in the patient s best interests, then they may not consent to withdrawal of treatment and the ICD therapy must continue, provided it remains ethical to do so. If on the other hand the advance decision was made after the LPA, it will take precedence, provided it is valid and applicable. If it is not valid and applicable, it will be up to the attorney to give/refuse consent to the withdrawal, provided they are authorised to do so under the LPA. If the attorney is not authorised, the decision will be made by the doctor in charge, on the basis of best interests. 14

20 Record of Decision to Withdraw Implantable Cardioverter Defibrillator (ICD) Therapy in an Adult Patient Patient s Name: NHS No: Section 1 Patient Details D. O. B. Home address: If in-patient, name of hospital or hospice and ward: Hospital number: Section 2 Device Details These will be available from the patient s ID card or the hospital where the device was implanted. Section 3 Current Multidisciplinary Team GP Cardiologist(s) Other hospital consultant(s) Lead nurse Specialist palliative care contact Heart failure nurse Social worker Section 4 Describe assessment of patient s current condition, likely prognosis and treatment options. (Take account of current guidance on good clinical practice and the views of the multidisciplinary team; consider if second opinion is necessary/would be helpful.) 15

21 Record of Decision to Withdraw Implantable Cardioverter Defibrillator (ICD) Therapy in an Adult Patient Patient s Name: NHS No: Section 5 Is the patient competent to express his/her views? Yes No Give brief details of any assessment of capacity. If yes, proceed to section 6 If no, proceed to section 7 Section 6 Describe discussions with patient on assessment, prognosis and treatment options including the anticipated benefit and burdens in continuing ICD therapy. Does the patient wish ICD therapy to be withdrawn? Yes No If yes, proceed to section 10. If no, continue to treat. Record patient s decision in case notes and secure this pro-forma, (completed as far as Section 6), within the case notes. If you are concerned that it is unethical to continue therapy, seek legal advice Section 7 Has patient made an advance decision refusing treatment, which is valid and applicable? (Check Mental Capacity Act Appendix in Explanatory notes) Yes No If yes proceed to section 10 If no proceed to section 8 NB: If there is an advance decision and LPA see 16 Note 11 in the Explanatory Notes.

22 Record of Decision to Withdraw Implantable Cardioverter Defibrillator (ICD) Therapy in an Adult Patient Patient s Name: NHS No: Section 8 Has the patient made a personal welfare Lasting Power of Attorney (LPA), which allows refusal of life-sustaining treatment? Yes No If no, proceed to section 9 If yes, does the attorney appointed under the LPA consent to withdrawal of ICD therapy? Yes No If yes proceed to section 10 If no, continue to treat, provided it remains ethical to do so. Record attorney s decision in case notes and secure this pro-forma, (completed as far as Section 8), within the case notes. If you are concerned that the attorney appointed under the LPA is not acting in the patients best interests or it is unethical to continue therapy, seek legal advice. NB: If there is an advanced decision and LPA see Note 11 in the Explanatory Notes. Section 9 Describe discussions with the patient, multidisciplinary team and those close to the patient with whom there is a statutory duty to consult about what course of action would be in the patient's best interests. If there is no-one close to the patient or properly interested in their welfare with whom it is practical and appropriate to consult a referral must be made to an Independent Mental Capacity Advocate (IMCA). The IMCA s views in brief were:- (attach IMCA s report for full detail) 17

23 Record of Decision to Withdraw Implantable Cardioverter Defibrillator (ICD) Therapy in an Adult Patient Patient s Name: Section 9 continued Is it the consensus view that it is in the patient s best interests for ICD therapy to be withdrawn? Yes No If yes, proceed to section 10 If no and consensus cannot be reached about best interests and particularly if the patient/those close to them or the IMCA disagree with the clinical view, seek legal advice about how to proceed. Section 10 I am the doctor currently in charge of the care of Delete as necessary I am satisfied that I have obtained the patient's valid informed consent to withdraw ICD therapy. I have obtained the consent of the patient s attorney, (who I am satisfied is appointed under an LPA to give consent in these circumstances) to withdrawal of the ICD therapy. I am satisfied that an advance refusal of ICD therapy exists, which is valid and applicable to the current circumstances. I am satisfied that the patient lacks capacity to consent to withdrawal of treatment and confirm that I believe it is in the patient s best interests that ICD therapy should be withdrawn. I have attempted to complete the necessary steps to ascertain any relevant views/wishes of the patient prior to becoming incapacitated and have taken account of the views offered by those close to the patient (where available), the IMCA, where applicable, and the views of the multidisciplinary team. I am satisfied that the patient lacks capacity to consent to withdrawal of treatment and confirm that I believe it is in the patient s best interests that ICD therapy should be withdrawn. Name Position Signature Date 18

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25 Further information about Cheshire & Merseyside Strategic Clinical Networks - Cardiovascular Workstream Contact: Wendy O Connor Quality Improvement Lead Cardiovascular Cheshire and Merseyside Strategic Clinical Networks Quayside Wilderspool Causeway Greenalls Avenue Stockton Heath WA4 6HL wendy.oconnor@nhs.net Phone:

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