Advance Directive Policy

The States of Jersey Department for Health & Social Services Advance Directive Policy DECEMBER 2007 Page 1 of 29

DOCUMENT PROFILE Document Registration Document Purpose Clinical Governance Policy Short Title ADVANCE DIRECTIVES POLICY Author Publication Date December 2007 Target Audience All H&SS Clinical Departments Circulation List Intranet (all staff); Hospital Library; Director CPPM Policy and Procedures for the management and operation of Description Advance Directives (Living Wills) Linked Policies Approval Route Executive Directors and Governance Board Review Date December 2009 Contact Details Director Corporate Planning & Performance Management, Health & Social Services, 4 th Floor, Peter Crill House, Gloucester Street, St.Helier, JE1 3QS Page 2 of 29

Table of Contents TABLE OF CONTENTS... 3 1. INTRODUCTION... 4 2. DEFINITIONS... 4 3. CONSENT... 7 4. MENTAL CAPACITY... 7 5. REFERRAL TO PSYCHIATRY FOR ASSESSMENT... 9 6. MINIMUM CONTENT OF AN ADVANCE DIRECTIVE... 9 7. ACTING ON AN ADVANCE DIRECTIVE PRESENTED UPON ADMISSION OR ATTENDANCE TO HOSPITAL... 11 8. WITHDRAWAL OF AN ADVANCE STATEMENT... 13 9. SPIRITUAL CARE OF A PATIENT WITH AN ADVANCE STATEMENT... 13 10. STORAGE OF AN ADVANCE STATEMENT... 14 11. DISCHARGE OF A PATIENT WHO HAS AN ADVANCE STATEMENT... 15 12. RESPONDING TO REQUESTS TO ASSIST WITH THE DRAFTING OF AN ADVANCE DIRECTIVE... 15 COMPLAINTS... 16 GLOSSARY... 16 APPENDIX 1... 17 LEGAL BACKGROUND... 17 APPENDIX 2... 19 ASSESSMENT OF BEST INTEREST... 19 APPENDIX 3... 21 LIVING WILLS A GUIDE FOR PATIENTS IN JERSEY... 21 REFERENCES AND FURTHER READING... 28 Page 3 of 29

1. Introduction 1.1. This guidance applies to all patients treated by the Department of Health and Social Services (HSS), aged 18 or above who are deemed mentally competent at the time of making an Advance Statement, and who have been fully informed of the implications of making such a statement. 1.2. The guidance will support staff in making appropriate and informed decisions when presented with an Advance Statement. 1.3. The guidance is based on specific advice given by the British Medical Association (1995). It also takes into account the provisions of the Mental Capacity Act 2005 which is due to become law in England and Wales as from April, 2007. Although this act will not be of any legal effect in Jersey, it is taken as an index of best practice. 1.4. The Nursing and Midwifery Council (NMC) also gives clear guidance in their Code of Conduct (2002), regarding Advance Statements. 1.5. The guidance should be considered with the Resuscitation Policy and the DNACPR policy. 1.6. If there is serious doubt about the legality of an Advance Statement made prior to a loss of competence, then legal advice should be sought. 2. Definitions 2.1. An Advance Statement is "a mechanism whereby a competent patient can provide instructions about what is to be done if they subsequently lose the capacity to make a decision or to communicate". (BMA, 1995).Advance Statements record general requests about future healthcare, religious beliefs, advance refusals of treatment or the nomination of a friend or relative to make healthcare decisions on their behalf. Advance Statements can be Page 4 of 29

written or oral and include such documents known as Living Wills or Advance Directives. 2.2. There are various types of advance statement a requesting statement giving someone's individual wishes and preferences This can help healthcare professionals identify how a person would like to be treated without binding them to that course of action if it conflicts with their professional judgement a statement of general beliefs and aspects of life which someone values a statement naming someone who should be consulted at the time a decision needs to be made a clear instruction refusing some or all medical treatments. This is known as an advance directive. a statement requesting certain types of treatment that someone would want to receive in certain circumstances; or a statement setting out a degree of irreversible deterioration after which no life sustaining treatment should be given. Advance statements can be a combination of some or all of the above Requesting statements and general statements of preference should be respected and taken into account by healthcare professionals, if appropriate, but they are not legally binding. 2.3. An Advance Directive is "a clear instruction refusing some or all medical procedures", and the authority for that instruction is derived from the established legal right of competent, informed adults to refuse treatment, irrespective of the wisdom of their judgement" (BMA, 1995). In the case of Attorney General v X 2004 JLR 1, which is a decision of the Royal Court and legally binding in Jersey, the Royal Court upheld an Advance Directive which refused nutrition, hydration or medical treatment. It is only these advance Page 5 of 29

refusals which are regarded as legally binding on healthcare staff. For further information on the legal background please see appendix 1. 2.4. The fundamental aim of an Advance Directive is to provide a means for the patient to continue to exercise autonomy and shape the end of his/her life (Travis et al, 2001). 2.5. An advance statement cannot: Ask to withhold basic care, defined by the British Medical Association (BMA) as procedures essential to keep the individual comfortable, e.g. warmth, shelter, pain relief and the management of distressing symptoms Authorise a doctor to do anything unlawful 2.6. Advance statements do not have to be followed by professionals when: A person is subject to compulsory powers under the Mental Health (Jersey) Law 1969 There is a medical situation which is not specifically covered by the advance statement. 2.7. Health professionals should not provide any treatment which is clearly contrary to an individual s health interests. In their Guidance on Withholding Life-prolonging Medical treatment, the BMA advises that there may be situations in which treatment could prolong life, but result in such severe pain or loss of function that extreme harm would be done to the patient (BMA, 2001). 2.8. Health professionals would therefore not be obliged to automatically comply with advance requests for life-prolonging treatments, but would be expected to take such preferences into account when assessing the patient s best interest (BMA, 2001). Page 6 of 29

2.9. An Advance directive cannot require a doctor to provide treatment for a patient which is not clinically indicated. (England Court of Appeal Decision (Burke) 2005) 2.10. Guidance for medical staff on the minimum content of an Advance Directive is given in section 6 3. Consent 3.1. The advice given by the Department of Health (2001) in its Reference Guide to Consent for Examination or Treatment regarding advance refusals is as follows: "Case law is now clear that an advance refusal of treatment which is valid and applicable to subsequent circumstances in which the patient lacks capacity is legally binding" (Department of Health, 2001). It goes on further to state that "Failure to respect such an advance refusal can result in legal action being taken against the practitioner" (Department of Health, 2001). 3.2. In the case of young people under the age of 18, Advance Statements should be taken into account and accommodated, if possible, but do not have the same status as those of adults (BMA, 2001). 3.3. It is important that Advance Statements are taken into consideration when gaining consent in the circumstance of the patient lacking mental capacity. Reasonable effort should be made to ensure that the patient's previous wishes are taken into consideration. 4. Mental capacity 4.1. It is important to assess the mental capacity of a patient to complete an Advance Statement at the time of writing, and to assess when the capacity for healthcare decision-making has been lost. 4.2. The competence of a person to consent to treatment depends on: Page 7 of 29

1. Understanding the proposed treatment, its benefits, risks and alternatives. 2. Understanding the consequences of not being treated. 3. Remembering the information long enough to make a decision. 4. The freedom (from pressure) to make a personal choice. (BMA, 2001) 4.3. A patient s mental capacity may also be affected by temporary factors such as confusion, shock, fatigue, pain or drugs, but those concerned must be satisfied that such factors are operating to such a degree that the ability to decide is absent. Another such influence may be panic induced by fear. Fear of an operation may be a rational reason for refusal to undergo it, but fear may also paralyse the will and destroy the capacity to make a decision. 4.4. In order to make a valid Advance Statement a patient should be able to weigh the implications and consequences of his or her choice, and 'the level of understanding required to make decisions should be commensurate with the gravity of the decision being made' (BMA, 1995). 4.5. Every person is presumed to have the capacity to consent to or to refuse medical treatment unless and until that presumption is rebutted. The Consultant or the nominated responsible medical officer, in charge of the patient's care, must make the decision regarding the patient s mental capacity. 4.6. If there is any doubt regarding the mental capacity of the patient, advice should be sought from a Psychiatrist prior to implementing the Advance Statement. 4.7. Whilst ensuring that Advance Statements are completed with as much information and understanding as possible it is also important to ensure that the Advance Statement was made without coercion by relatives, carers and healthcare staff (BMA, 1995). This should be assessed whenever possible at the same time as mental capacity. Page 8 of 29

5. Referral to Psychiatry for assessment 5.1. There are two circumstances where it will be advisable to seek a psychiatric opinion: when there is doubt about a patient's mental capacity, or when there is concern that mental disorder may be leading to impaired judgement. 5.2. In assessing capacity, remember that mental states may fluctuate or that capacity may be more clearly present in one area of decision making than another. If a patient has seemed confused or lacking in capacity at any stage during an admission, then considerable caution should be exercised in assessing capacity, and expert help sought. 5.3. Mental disorders such as depression can be associated with unreasonable hopelessness, or feelings of being a burden, that can lead a patient to make a decision to discontinue treatment. Obvious clues include a recent history of psychiatric treatment or evidence of current low mood. The possibility should also be borne in mind if patient's decision is incongruous; for example if he or she is refusing intervention for an eminently treatable condition, if the decision marks a definite change of mind, or if it comes as a surprise to family members or involved health professionals. 6. Minimum Content of an Advance Directive 6.1. Advance Statements only extend into future situations, and are only applicable to options that are legally available. Patients cannot demand or refuse anything in advance that they cannot legitimately demand or refuse when conscious and competent. Patients should not be able to refuse basic care (as defined in 2.5) in advance (BMA, 1995). This must however be taken to be subject to the ruling of the Royal Court in Attorney General v X that an adult of sound mind is entitled to refuse in advance nutrition, hydration or medical treatment. Where there is an Advance Directive of that Page 9 of 29

nature, nothing should be done in the way of giving basic care which would infringe the Advance Directive. 6.2. According to the British Medical Association (1995) the necessary components of a properly written Advance Directive are as follows: Full name and Address. Name and address of GP. Whether advice has been sought from health professionals. Signature. Date drafted and reviewed. Witness signature. A clear statement of the patient's wishes, general or specific. The name, address and telephone number of any person that the patient would wish to be consulted about treatment in the event of mental incapacity.* *Even though English law does not yet support the role of such people as proxy decision-makers, it would undoubtedly be seen as good practice to consult them, in the light of such clear documentary evidence. The Mental Capacity Act 2005 will allow the writing of a Lasting Power of Attorney (LPA) which will allow patients to elect a proxy decision maker for healthcare decisions. The act will not have legal authority in Jersey but will influence practice. (Please see appendix 1). 6.3. The components set out in 6.2 above are for guidance only. An Advance Directive will not necessarily be ineffective because one or more of the components is not there. What is essential is that the Advance Directive should contain a clear statement of the patient s wishes, general or specific, that it should be signed by the patient, and that the signature should be witnessed and dated. Page 10 of 29

6.4. The other items of information will reassure medical staff, in an emergency, that the Advance Directive is genuine and can safely be acted upon. 6.5. A doctor may be informed by a patient of their wishes for treatment if they should lose capacity. Such conversations should be recorded in the medical notes and witnessed. These conversations are advance statements and are not legally binding. Nevertheless such documentation is often helpful in end of life decision making. 7. Acting on an Advance Directive presented upon admission or attendance to hospital. 7.1. Emergency situation 1. Presentation of the Advance Directive 2. Contact the Consultant or nominated Responsible Medical Officer. 3. Assess the Advance Directive to ensure that it is clear and applicable. 4. Assess the Advance Directive to ensure it is valid. 5. If the Advance Directive is not clear, applicable and valid then the Consultant or nominated Responsible Medical Officer and the Multidisciplinary Team should consider the patient's known preferences and assess and act in the patient's best interest (Appendix 2) 6. If the Advance Directive is clear and valid but does not address the current emergency situation then emergency treatment should be given. 7. If the Advance Directive is clear and valid and addresses the emergency situation but there is evidence of changed opinion then emergency treatment should be given. 8. If the Advance Directive is clear, valid and addresses the emergency, and there is no evidence of changed opinion, the Advance Directive should be considered by the Consultant or Page 11 of 29

nominated Responsible Medical Officer and Multidisciplinary Team and the Directive refusing treatment should be respected. 7.2. Non-Emergency situation 1. Presentation of the Advance Directive 2. Contact the Consultant or nominated Responsible Medical Officer. 3. Assess the Advance Directive to ensure that it is clear and applicable. 4. Assess the Advance Directive to ensure it is valid. 5. If the Advance Directive is not clear, applicable and valid then the health care team should consider the patient's known preferences and assess and act in the patient's best interest (Appendix 2). 6. The Consultant or nominated Responsible Medical officer should assess the patient to ensure that they have mental capacity. 7. If the patient is mentally competent and able to advise about their views on current medical decisions the Advance Directive does not yet apply. However, the Consultant or nominated Responsible Medical Officer should discuss the implications with the patient to ensure that they are fully informed of the consequences should the Advance Directive need to be used during their hospital stay. 8. If there is any doubt about the patient's mental capacity or ability to make decisions then Psychiatry should be contacted for advice. 9. If the patient does not withdraw the Advance Directive following discussion of the implications the Advance Directive should be regarded as current and refusal of treatment adhered to in the event of subsequent mental incapacity. 10. This should be documented in the medical and nursing notes and a copy of the Advance Directive filed in the patient's notes. 11. If at any point of change in condition of the patient or the treatment, the patient is still mentally competent, then the Advance Directive should be discussed with the patient to ensure that the patient still wants it to apply. Page 12 of 29

7.3. Upon discharge from hospital the patient should be advised to discuss the Advance Directive with their General Practitioner. It should be communicated to the General Practitioner as part of the discharge letter. 7.4. The pregnant patient In the case of a pregnant patient the Court of Appeal of England and Wales has now made it clear that the wishes of a mentally competent mother must be observed, a ruling which was cited with approval by the Royal Court in Attorney General v X. The foetus, up to the moment of birth has no separate interests capable of being taken into account so as to override the wishes of the mother. Therefore an Advance Directive, if it fits the criteria as stated above, should be respected. 8. Withdrawal of an Advance Statement 8.1. Any Advance Statement is superseded by a clear and competent, contemporaneous decision by the individual concerned (BMA, 1995). 8.2. Upon presentation of an Advance Statement the Consultant or nominated responsible Medical Officer should discuss the consequences of the Advance Statement and ensure that the patient still wishes to continue with all the contents, should the patient become incapacitated. This should be documented in the medical and nursing notes. 8.3. If the condition or treatment of the patient changes it is important to ensure that the Advance Statement is discussed in light of this. 9. Spiritual care of a patient with an Advance Statement 9.1. The Spirituality and Spiritual needs of patients holding an Advance Statement will vary considerably. Every effort should be made to provide Page 13 of 29

care that is consonant with the patient s previous practices, and supported by the patient s family and close carers. 9.2. It is helpful to note the advice given in the 12 key points on consent: the law in England by the Department of Health: Best interests go wider than best medical interests, to include factors such as the wishes and beliefs of the patient when competent, their current wishes, their general well-being and their religious and Spiritual welfare. 9.3. The support of the Hospital s chaplaincy team should be sought when there is evidence that a now non-competent patient has previously stated that they belonged to a religion or expressed a particular Spirituality. 9.4. Support is also available for relatives, carers and staff on request, when an advance statement is operative. 9.5. There may be instances when staff may not believe that the decision made by the team is the right one. Staff should be given the opportunity to raise any conscientious objection with their manager, but must continue to provide care to the best of their ability until alternative arrangements are implemented. (NMC 2002) 10. Storage of an Advance Statement 10.1. Careful consideration should be given to the storage of Advance Statements, and although the primary responsibility for this lies with the patient, it is recommended that a copy of any written statement should be given to the patient s General Practitioner (BMA, 1995). Page 14 of 29

10.2. In the case of chronically ill patients, who are treated by a specialist team over a prolonged period, a copy of the Advance Statement should be in all relevant hospital files and the GP record (BMA, 1995). 10.3. Any Advance Statement presented on admission or attendance to hospital should be recorded in the medical and nursing notes, and a copy, wherever possible, should also be stored in the patient's notes. 11. Discharge of a patient who has an Advance Statement 11.1. Upon discharge from hospital the patient should be advised to discuss the Advance Statement with their General Practitioner (GP) and to keep a copy of the Advance Statement with their GP notes. 11.2. The General Practitioner should be made aware of the existence of an Advance Statement as part of the hospital discharge letter. 12. Responding to requests to assist with the drafting of an advance directive 12.1. Healthcare workers may be asked by patients to assist with the drafting of an advance directive. There is risk in being involved with such a practice. Patients making such a request should be referred to the HSS document Living Wills. This gives advice for individuals living in Jersey on the risks, benefits and method of writing an advance directive. (Appendix 3) Page 15 of 29

Complaints Any complaints that patients or relatives may have concerning an Advance Statement should be discussed with the healthcare team. If this does not resolve the complaint the complainant should be directed to the hospital complaints co-ordinator Glossary Advance statement A mechanism whereby a competent patient can provide instructions about what is to be done if they subsequently lose the capacity to make a decision or communicate. Advance directive A clear instruction refusing some or all medical procedures. An Advance Directive can also refuse nutrition and hydration. Best interest Offering those treatments where the possible benefits outweigh any burdens or risks associated with the treatment and avoiding those treatments where there is no net benefit to the patient. Incapacitated Lacking mental capacity. Mental capacity Sufficient understanding and memory to comprehend in a general way the situation in which one finds oneself and the nature, purpose and consequences of any act or transaction into which one proposes to enter. Proxy decision-maker A patient who has lost capacity to make decisions may have previously indicated whom they wish to represent their views or decisions on their behalf. Valid Having legal force, legally acceptable or usable. Page 16 of 29

Appendix 1 Legal Background There is no legislation in Jersey providing for Advance Directives. However the Royal Court has in the case of Attorney General v X explicitly upheld the legal validity of an Advance Directive provided that the relevant criteria are satisfied. In the same case, the Royal Court has stated that in matters of this nature Jersey law has tended to be similar to English law, and that it would seem highly undesirable in principle that the duties and obligations of doctors in Jersey should be different from those in England, particularly given that these difficult matters can arise as a matter of emergency. Accordingly this review refers to English case law as well as to decisions of the Royal Court. In the case of Tony Bland, the patient who was left in a Persistent Vegetative State (PVS) after the Hillsborough Stadium disaster, the House of Lords considered the validity of Advance Directives, even though Tony Bland had not made one. Lord Keith ruled that: a person is completely at liberty to decline to undergo treatment, even if the result of his doing so will be that he will die. This extends to the situation where the person, in anticipation of his entering into a condition such as PVS, gives clear instructions that in such an event he is not to be given medical care, including artificial feeding, designed to keep him alive. (Airedale NHS Trust v. Bland [1993] All ER.821). The most recent legal principles to which this guidance refers, were stated clearly by the Court of Appeal, in the case of St. George s Healthcare NHS Trust v S, as follows: Where the patient has given an advance directive, before becoming incapable, treatment and care should normally be subject to the advance directive. (St George s Healthcare NHS Trust v. S [1998] 3 All ER 673). Page 17 of 29

Both Airedale NHS Trust v Bland and St George s Healthcare NHS Trust v S were cited with approval, and the principles which they set out were adopted, by the Royal Court in Attorney General v X [2004] JLR 1. In his proposals for reform of the law concerning mental incapacity (Making Decisions), the Lord Chancellor stated that the Government respects the right of people with capacity to define in advance which medical procedures they will and will not consent to when capacity is lost. (Lord Chancellor s Department, 1999). The Lord Chancellor has since expressed a preference for the use of a Continuing Power of Attorney for healthcare decisions (a specific feature of his reforms of the law in this area). The reason for this preference is that it avoids the need for a patient to look into a crystal ball and try to guess all the eventualities that may ensue in the future, including all the medical and technological advances. (Lord Chancellor s Department Text of speech to Law Society,1999). The Lord Chancellor s proposals form the basis of the Mental Capacity Act 2005 which will become law in England and Wales in April 2007. This law regulates the situation in England and Wales regarding proxy decision makers. Individuals will be able to legally give another person a Lasting Power of Attorney over their affairs. This will allow that person to legally make decisions (including healthcare and end of life decisions) if the person loses capacity. They will greatly improve the situation of mentally incapable patients in England and Wales, who at present have to be treated in a legal limbo, in which neither the patients nor their carers are able to consent to treatment or to decline it (Eccles, 2001). Though this law will not have effect in Jersey, it will give authority to a properly constituted Advance Directive if it does include the name of a proxy decision maker. Issues relating to the provision of medical treatment, the preservation of life and the right to self-determination may bring into play provisions of the European Convention on Human Rights. The Convention applies to Jersey, and though it cannot yet be directly enforced in the Royal Court, anyone complaining that one of their Page 18 of 29

Convention Rights has been breached in Jersey can seek a remedy in the European Court of Human Rights. The relevant Articles of the Convention are to be found in the first schedule to the Human Rights (Jersey) Law 2000, which has not yet been brought into force. Article 2 protects the right to life, Article 3 prohibits torture or inhuman or degrading treatment, while Article 8 provides that everyone has the right to respect for his private life. The right to respect for one s private life conferred by Article 8 of the Convention includes a right to make decisions as to one s own medical treatment. Health professionals should refrain from artificially preserving life where it is clear that the patient would consider the resulting situation to be an inhuman or degrading state, nor should any mentally competent patient be given against their will treatment which they have refused and which they would regard as inhuman or degrading. The duty to protect life must be balanced with the twin obligations, firstly, not to subject patients to inhuman or degrading treatment, and secondly, not to infringe the patient s right to respect for their private life, which includes the right of choice. Assessment of Best Interest Appendix 2 Where patients are no longer competent, the General Medical Council has advised that doctors should always act in their best interests (GMC, 1998). They have advised that the assessment of a patient s best interests should take account of the following factors: 1. The clinical indications for treatment. 2. The patient's previously expressed preferences, including any Advance Statement. 3. The patient's cultural and religious background. 4. The views of those who know the patient e.g. partners, parents, relatives, friends and carers. Page 19 of 29

5. Which option restricts the patient s future choices the least, when more than one treatment is reasonably in the patient s interest. The Mental Capacity Act 2005 covers this issue in some detail. It states: (6) He (the Doctor) must consider, so far as is reasonably ascertainable (a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity), (b) the beliefs and values that would be likely to influence his decision if he had capacity, and (c) the other factors that he would be likely to consider if he were able to do so. (7) He must take into account, if it is practicable and appropriate to consult them, the views of- (a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind, (b) anyone engaged in caring for the person or interested in his welfare, (c) any donee of a lasting power of attorney granted by the person, and (d) any deputy appointed for the person by the court As Jersey law does have the provision for a lasting power of attorney or a court appointed deputy, this simply confirms the GMC guidance on this issue. Page 20 of 29

Appendix 3 Living Wills A Guide for Patients in Jersey Introduction This booklet has been designed to give you the necessary information to help you to decide whether to make a living will, and should you decide to make one, it shows you how to draft it. Frequently asked questions What are Living Wills? Living wills can be a written document, a witnessed oral statement, a signed printed card, a smart card, or a note of a discussion recorded in the patient s file. Only a properly written advance directive is legally binding. This would need to contain the information set out in the section below entitled What kind of things should I include in my living will? as a minimum. A living will can outline treatment, or specific procedures, which you would want or would not want if you became seriously ill, and lost mental capacity. What are the limitations of a living will? A living will can only reflect a person s wishes at the time at which it was written, and many circumstances, including improvements in medical science and available treatments can change as time passes. That is why we encourage people to ensure that they review their wishes at regular intervals, and remember to destroy any previous version of the document after making changes to them. The living will has to be interpreted to make sure that the situation it describes does still apply. A living will cannot be used to: refuse basic nursing care, i.e. basic hygiene and pain relief stop staff offering you food and drink by mouth request euthanasia or unreasonable treatment In addition a living will cannot allow refusal of treatment if this goes against a valid court order made due to the person s medical condition. It may not specify any particular treatment that should be applied, if this conflicts with the professional judgement of the Page 21 of 29

responsible doctor. Finally, it cannot require a doctor to act illegally, for example by assisting euthanasia. Who can make a living will? Living wills made by people under 18 are not legally binding and can be over-ruled by a court or person with parental responsibility, but nevertheless they should be taken into account and accommodated if possible. When making a living will you should be mentally able and not suffering any mental distress. You must understand the implications of your decisions. You may have a mental illness and still make a valid living will as long as you understood the implications of what you were doing. You must be competent to make the decision in question. Competence to make medical decisions does not imply necessarily that you need to be competent to make other decisions (e.g., relating to financial affairs) What are the patient s responsibilities? When making the living will, you should, in order to form a legally binding living will, ensure that you are: fully informed of the nature and consequence of the living will clear that the living will should apply to all situations or circumstances which arise later: not pressurised or influenced by anyone else over the age of 18 What are the doctor s responsibilities? Doctors have legal and ethical obligations to act in the best interests of their patients, which includes acting in accordance with the past and present wishes and feelings of the patient as well as clinical factors. Doctors must be satisfied that illness, medication, false information or pressure from other people did not affect the patient s capacity at the time of deciding. Doctors must comply with the patient s request even if they have a conscientious objection. Usually it will be possible for the doctor to step aside to allow a colleague to manage the patient in accordance with the wishes to withhold life prolonging treatment, however if an emergency arises and this is not possible the doctor must comply with a legally valid living will. What is the legal position of a living will? Page 22 of 29

There is no statute in Jersey that governs the use of living wills. The law on the subject is set out in the decision of the Royal Court in Attorney General v X 2004 JLR 1, which upheld the right of a legally competent adult to give an Advance Directive (another name for a living will) refusing nutrition, re-hydration or medical treatment, which would not only be effective while the patient maintained the necessary mental capacity but would remain effective after he had lost it. For the living will to be legally binding the individual must have had mental capacity when he made it, have envisaged the type of situation that has subsequently arisen, and have understood the consequences of the decision. Provided it satisfies the relevant criteria, it will be binding after he has lost that capacity. What is a health care proxy? A health care proxy is someone nominated to make decisions on clinical treatment on your behalf in the event of you becoming incapable of making, or communicating, you own decision. Thus you might decide to appoint someone who would otherwise have no formal standing as a proxy. This individual does not have to be a medically trained professional. Must a health care proxy always be consulted? In Jersey, the health care proxy s views are not presently legally binding. Doctors in Jersey must be registered with the General Medical Council (GMC). The GMC states that : Where a patient's wishes are not known and you are not aware of an advance refusal, you - as the senior clinician responsible for the patient's care - have responsibility to make a decision about what course of action would be in the patient's best interests. However, you should consult the healthcare team and those close to the patient for any information that may be relevant to the decision, including their views about what the patient's wishes might have been. You should pay due regard to any previous wishes of the patient about not disclosing information to particular individuals. 1 If a properly worded advance directive states that a particular person should be consulted as a proxy decision maker, it would be standard practice to take note of their views in reaching a decision over treatment if the person lacked capacity. Proxy decision makers cannot demand treatment that is judged to be against the patient s interests. Are doctors and nurses able to over-ride a living will? 1 Withholding and Withdrawing Life-prolonging Treatments: Good Practice in Decision-making GMC 2002 Page 23 of 29

Only in exceptional cases are doctors and nurses able to override a living will. There must be evidence to suggest that you did not understand the implications of your living will when you drafted it, or that you did not envisage this situation. Emergency treatment should not normally be delayed in order to look for a living will, if there is no clear indication that one exists. The principle of necessity allows doctors and nurses to provide treatment without consent. Healthcare professionals will be legally liable for disregarding the terms of a living will if they are aware of the statement s existence and if it is applicable to the circumstances provided of course that the living will does not direct them to act in a way which the patient could not have directed them to act in while he was still mentally competent. What if the person is no longer able to make a decision due to impaired mental function? It is illegal and unethical to treat an adult, who is capable of understanding and communicating their decision, without the nature of the procedure, its purpose and implication being fully explained and agreement obtained. If the person is no longer able to make a decision due to impaired mental function then doctors may treat the patient without consent providing the treatment is both immediately necessary to save life or avoid significant deterioration in the patient s health and in the patient s best interests. If a living will exists it would be deemed in the patient s best interests for treatment to be withheld in accordance with its terms. Where there is known to be a valid and binding living will which states that the patient does not wish to receive a particular medical treatment, that medical treatment must not be given. Giving the treatment would constitute an assault and the health professional providing the treatment would be guilty of that assault. What if there is a dispute about treatment? If a person is now incapacitated but is known to have objections to all or some treatment, then health professionals may not be justified in proceeding. They will need to consider the available evidence about the patient s views and how convincing it seems. How does a living will work? The living will needs to specify a clearly identifiable trigger event that causes the requirements of the living will to be acted upon. This might reasonably be expected to be the onset of incompetence, or perhaps the occurrence of some further event (such as a treatable condition like pneumonia) after incompetence has been established. Everyone involved clinical care-givers, relatives, carers must agree that the trigger event has occurred. This may require a doctor to confirm that there is no hope of recovery and, in many cases that the illness will result in death very soon. All clinical care-givers are then Page 24 of 29

bound by the conditions of the living will and information about the living will then be recorded in the clinical records. Who holds the living will? In Jersey, anyone can hold the living will, the best person would usually be your GP, a partner or friend. It is recommended that a copy be kept with the person s medical notes held by their GP, so as to simplify the process of identifying the document. You may also wish to carry with you something to indicate that there is a living will in existence, particularly, for example, if you are suffering from an advanced terminal condition. Doctors are advised to ensure that every effort is made to check if someone has a living will or has appointed a proxy, if a situation arises where loss of mental function occurs Who decides if the conditions set out in the living will should continue to apply for example if a person s situation changes since he/she wrote the living will? Ultimately the health professional attending, usually the doctor in charge of your care will decide whether the conditions set out in the living will should apply. The doctor will have to certify that you are mentally incompetent to give consent for the living will to apply. It is essential that any health professionals intending to act on directions given in a living will should have the living will itself in their possession. If the living will fulfils the criteria to be legally binding, the health professional must obey its terms or risk being charged with assault. That is why it is important to remember to destroy any previous version of the document after making changes to it. If the living will does not absolutely envisage the situation that has arisen, or if the living will nominates a healthcare proxy, a meeting will be convened with the proxy and where appropriate, other family members, at which the Doctor with responsibility for the patient s care will sound out opinions and make a decision regarding the patient s best interests. It is at this meeting that it will be necessary for someone to provide evidence that the person s situation has changed since writing the living will. How do I go about writing a living will? Many internet sites include proformas for completing a living will. People living in Jersey should be aware that the law in Jersey is different from the law in England. This will particularly be the case after 1 st April 2007 when the Mental Capacity Act 2005 becomes law in England. After that time there will be a set legal process for registering a proxy decision maker in England which will not apply in Jersey. It would be very unlikely that this law would make any difference to the operation of a living will but it may mean that standard UK living will proformas will be poorly worded for use in Jersey. Page 25 of 29

There is no set form for making a living will. It should, obviously, be clearly legible, so that if it is written by hand rather than typed, you should ensure that every word can be clearly read. The matters which it should contain are set out below under the subheading What kind of things should I include in my living will?. It should then be lodged with your medical notes and where possible with other appropriate people such as friends, family or a partner. You should give much thought about what you put in a living will, and should discuss in advance with those close to you what you would want to happen in the event of not being able to communicate with them or with clinical staff. Do I need a lawyer? A solicitor is not necessary although advice from a lawyer can be beneficial. What kind of things should I include in my living will? At the minimum the following information must be included in a living will: Full name Address Name and address of GP (if you have one) Whether advice was sought from health professionals and if so, when and from whom. Signature Witness signature The witness should be an adult of full mental capacity and should have no pecuniary interest in your death. It is therefore recommended that the witness is not a spouse, partner or close relative. The name of the witness should be typed or printed below the signature, as signatures are not always legible, and a contact address should be given. Date upon which the living will was signed and witnessed A clear statement of your wishes, either general or specific The name, address and telephone number of your nominated person if you have one. How often should they be updated? Living wills should be reviewed regularly, as it is important that you have not changed your mind between the date of making the living will and the date when you fall mentally incompetent. What if I want to change my living will after I have written it? Page 26 of 29

A living will can be altered at any time, and the alteration can be made orally, by telling your doctor. It is advised, however, that when an alteration is made, all copies of the previous living will are destroyed in order to prevent confusion. How do I appoint a proxy? In Jersey, you can appoint a proxy by living will. So it is possible to nominate a proxy in any of the ways possible to make a living will. Either by a written document, a witnessed oral statement, a signed printed card, a smart card, or a note of a discussion recorded in the patient s file. The decisions of a proxy are not legally binding on healthcare professionals but will be taken into account in determining a patient s best interests. Can I make provision for euthanasia in my living will? Euthanasia is illegal in Jersey, and therefore it is not possible to make such a provision in a living will. Useful addresses Patients Association PO Box 935 Harrow Middlesex HA1 3YJ Tel: 020 8423 9111 Fax: 020 8423 9119 Helpline: 0845 6084455 Email: mailbox@patients-association.com www.patients-association.com BMA Medical Ethics Department BMA House Tavistock Square London WC1H 9JP Tel: 020 7387 4499 Fax: 020 7383 6400 Email: info.web@bma.org.uk Royal College of Nursing 20 Cavendish Square London W1G 0RN Resuscitation Council (UK) 5th Floor Tavistock House North Tavistock Square London WC1H 9HR Tel: 020 7388 4678 Fax: 020 7383 0773 Email: enquiries@resus.org.uk Page 27 of 29

References and further reading Attorney General v X (2004) JLR 1 Airedale NHS Trust v Bland, (1993) 1 All ER 821. St. George s Healthcare NHS Trust v S (1998) 3 All ER 673. British Medical Association. Advance Statements about Medical Treatment. London: BMJ Publishing Group 1995. British Medical Association. Withholding and Withdrawing Life-prolonging Medical Treatment. Guidance For decision making. Second Edition. London: BMJ Books 2001. British Medical Association. Consent Toolkit. London: BMA 2001. British Medical Association, Resuscitation Council and Royal College of Nursing. Decisions relating to cardiopulmonary resuscitation. March 2001, (web.bma.org.uk/cpr). Department of Health. Reference Guide to Consent for Examination or Treatment. Department of Health 2001. www.doh.gov.uk/consent Department of Health. 12 key points on consent: the law in England - cited in the Bulletin of Medical Ethics November 2001 p. 4 Burke, R (on the application of) v General Medical Council & Ors [2005] EWCA Civ 1003 (28 July 2005) http://www.bailii.org/ew/cases/ewca/civ/2005/1003.html Eccles, J.T., Mental capacity and medical decisions, Age and Ageing 30 (2001) 5-7. Page 28 of 29

General Medical Council, Good Medical Practice, GMC, 1998, 6. General Medical Council. Seeking patients consent: The ethical considerations. GMC 1998 Withholding and Withdrawing Life-Prolonging Treatment: Good Practice in Decision-Making. General Medical Council 2002 (www.gmc-uk.org) Lord Chancellor s Department. Making Decisions. Cm 4465. 1999. www.dca.gov.uk/family/mdecisions/indexfr.htm Lord Chancellor s Department. Text of Speech to The Law Society. Nov 1999. www.dca.gov.uk/speeches/1999/10-11-99.htm Mental Capacity Act 2005 Department of Constitutional Affairs website. www.dca.gov.uk/menincap/legis.htm Nursing and Midwifery Council. Code of Professional Conduct NMC (2002) Travis S, Mason J, Mallett J and Laverty D Guidelines in respect of advance directives: the position in England. International Journal of Palliative Nursing. 7(10) (2001) 493-500. Page 29 of 29