UK LIVING WILL REGISTRY

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2 Introduction A Living Will sets out clearly and legally how you would like to be treated or not treated if you are unable to make, participate in or communicate decisions about your medical care in the future. Please carefully read each section of this document, including Section H: User Notes. A Living Will consists of one or more of the following elements: An Advance Decision (Section B of this document) An Advance Statement (Section C of this document) Your wishes regarding other matters such as funeral arrangements and organ donation. Instructions for completing your Living Will. 1. You must complete Section A: Declaration. This section confirms that you have made your Living Will after full and careful consideration, and that you are of sound mind. 2. If you wish to refuse life-sustaining treatment or resuscitation under certain circumstances, complete Section B: Advance Decision. This section must be signed and witnessed, ideally by someone who is not a close relative, and does not expect to benefit from your will. 3. If you wish to set out your wishes regarding any other aspect of your care and treatment, complete Section C: Advance Statement. 4. If you have previously granted Lasting Power of Attorney (LPA) including the power to make decisions regarding your treatment, complete Section D: Lasting Power of Attorney. 5. If you wish to make instructions regarding funeral arrangements, complete Section E: Funeral Arrangements. 6. If you wish to make instructions regarding organ donation, complete Section F: Organ Donation. 7. If you wish at a subsequent date to confirm that this Living Will remains a true and full reflection of your wishes, including the refusal of life-sustaining treatment, complete Section G: Confirmation of Declaration. 8. Carefully read the User Notes and Checklist at Section H: User Notes. 9. Ensure copies of this Living Will are kept in your medical notes, and if possible with a solicitor and family and/or friends LIVING WILLS & LIFE VAULT LTD REF: LW 14/1/2014

3 SECTION A: DECLARATION See User Notes, p. 15 To my Health Care Providers, my family, my solicitor and all others concerned in my care and treatment: I confirm that I make this Living Will when I am of sound mind, and after full and careful consideration. This document is a true reflection of my wishes and values. I ask that its instructions and decisions be followed should I become unable to communicate my wishes in the future. Name Address Signature Date SIGNATURE OF WITNESS I declare that the above-named has signed this document in my presence. I am content that s/he is of sound mind and in full mental capacity, and makes this Living Will entirely of his/her own choosing, under no duress. I believe this document to accurately represent his/her wishes, and that s/he fully understands its implications. Witness Name Address Signature Date 3 REF: LW 14/1/ LIVING WILLS & LIFE VAULT LTD.

4 Healthcare Certification of Capacity (Recommended where an Advance Decision is made) I understand that by virtue of section 3 of the Mental Capacity Act 2005, in order to have mental capacity to take a decision a person must be able to: (a) understand all information relevant to that decision; and (b) be able to retain such information for so long as is required to take the decision; and (c) weigh up that information as part of a decision making process; and (d) communicate any decision reached. I also understand that capacity is issue specific. By this it is meant that a person may be able to understand basic information and take basic decisions (what food to eat, what clothes to wear), but may lack capacity to take more serious decision (such as refusing treatment). I confirm that [NAME] has been my patient for [X] years and that on [DATE] I reviewed [him/her]. Following such review I can confirm that he/she was suffering from no mental or physical impairment such as to deprive him/her of capacity to make an Advance Decision dealing with the future treatment specified in the Advance Decision. If you are treating the person making this Decision please set out below: 1. Your name, area of medical expertise and current level of seniority. Response: 2. The condition for which you are providing treatment (if any). Response: LIVING WILLS & LIFE VAULT LTD REF: LW 14/1/2014

5 3. Whether you have/have not discussed the circumstances and treatment specified in the Advance Decision set out below and (if applicable) the date upon which the discussion took place Response: Signed Date Address SIGNED (WITNESS) Witness Name Date Of Birth Address Signature Date If the witness to this document is professionally involved in the health care or legal affairs of the individual making this Living Will, please provide details below: 5 REF: LW 14/1/ LIVING WILLS & LIFE VAULT LTD.

6 SECTION B: ADVANCE DECISION See User Notes, p. 15 I declare that if at any time I suffer from any of the conditions or endure any of the states set out below; and I am unable to make, participate in or communicate decisions about my care; and Two independent physicians qualified to opine on the relevant issues confirm in writing that I am unlikely to recover from illness, or from lifelong impairment involving severe distress and that it is not in my best interests for any of the treatment set out below to be provided or continued. My directions are as follows: 1. I wish to refuse the life-prolonging treatments indicated below. I understand that in refusing these treatments my life may be shortened. Examples of treatment to be refused (is it important to discuss these with your GP or other Health Care Provider): a. Artificial ventilation if I can no longer breathe unassisted b. Artificial resuscitation in the event of cardiac arrest c. Artificial feeding, whether into the stomach or a vein unless such treatment is anticipated to be for a limited period only to allow me to overcome some treatment or procedure that is not within the terms of this Advance Decision and excluded. d. Invasive surgery e. Dialysis f. Blood transfusions LIVING WILLS & LIFE VAULT LTD REF: LW 14/1/2014

7 Circumstances Treatment to be refused If I suffer from an incurable terminal condition expected to cause my death in a relatively short time (such as cancer which has spread considerably and irreversibly) If I suffer from advanced degenerative disease of the nervous system (such as Motor Neurone Disease) If I suffer severe and lasting brain damage (including because of injury, stroke or disease) If I suffer from severely advanced dementia resulting in limited awareness and inability to initiate simple tasks (such as Alzheimer s) If I am diagnosed as severely and permanently mentally impaired If I am in a persistent vegetative state and unlikely to regain consciousness (such as in a comatose state from which I am unlikely to recover) If there are specific or additional conditions not provided for in the table above, and for which you would wish to refuse life-sustaining treatments, please detail below. 7 REF: LW 14/1/ LIVING WILLS & LIFE VAULT LTD.

8 2. If I suffer any distressing or degrading symptoms (including those caused by lack of food or fluid), they should be fully controlled by appropriate palliative care, including pain-relieving treatments which may shorten my life. 3. If I suffer seriously distressing, degrading or painful symptoms which could be relieved by any of the treatments set out in section (1) above, those treatments may be used. However, this is on condition that the treatments are used purely for the purpose of elimination of those symptoms, and not for the short prolongation of life. 4. If treatment administered with the expectation of recovery proves futile, it must be discontinued immediately. 5. I absolve all those involved in my care and treatment from liability arising from acts and omissions carried out in accordance with this document. I thank them for their care, and their respect of my wishes. Signature Date Signature (Witness) Date LIVING WILLS & LIFE VAULT LTD REF: LW 14/1/2014

9 SECTION C: ADVANCE STATEMENT See User Notes, p. 15 If at any time I am unable to make decisions or communicate my wishes about my care and treatment, I wish the following to be taken into account by my GP, specialists, nurses, other health care professionals, family and friends: Regarding medical treatment which is not essential to sustain or prolong my life: Regarding my general daily care and hygiene, including food and drink: Regarding visitors and attendees during my illness: 9 REF: LW 14/1/ LIVING WILLS & LIFE VAULT LTD.

10 Regarding my religious, ethical or moral values or convictions: Regarding any other matters in which I wish my strongly-held views to be taken into account: LIVING WILLS & LIFE VAULT LTD REF: LW 14/1/2014

11 SECTION D: LASTING POWER OF ATTORNEY See User Notes, p. 15 I understand that the views and decisions set out in this document supersede any expressed by an individual to whom I have previously granted LPA with power to make decisions about life-sustaining treatment. I am aware that if I grant LPA with power to make decisions about life-sustaining treatment after the date of this document, their wishes will supersede those expressed here. Signature Date 11 REF: LW 14/1/ LIVING WILLS & LIFE VAULT LTD.

12 SECTION E: FUNERAL ARRANGEMENTS See User Notes, p. 15 I wish my family, friends, and all others involved in my health care and legal affairs to take into account the following wishes and values when making arrangements for my funeral: LIVING WILLS & LIFE VAULT LTD REF: LW 14/1/2014

13 SECTION F: ORGAN DONATION See User Notes, p. 15 Please tick the appropriate box. I confirm that I am content for any of my organs or tissue to be used for transplantation after my death. I confirm that I do not wish any of my organs or tissue to be used for transplantation after my death. Signature Date 13 REF: LW 14/1/ LIVING WILLS & LIFE VAULT LTD.

14 SECTION G: CONFIRMATION OF DECLARATION See User Notes, p. 15 I understand that my Advance Decision, and all other aspects of my Living Will, may be revoked at any time by me orally or in writing. I understand that unless I revoke my Advance Decision orally or in writing, the wishes expressed in this document will be considered final. I confirm that the wishes set out in this Living Will, including my Advance Decision regarding the refusal of lifesustaining treatment, remain a true and accurate reflection of my wishes. Signature Date LIVING WILLS & LIFE VAULT LTD REF: LW 14/1/2014

15 SECTION H: USER NOTES Read these User Notes carefully before completing each section of your Living Will. They will help ensure your Advance Decision relating to refusal of life-sustaining treatment is legally valid, and that all other wishes relating to your care are clearly expressed in your Advance Statement. Section A: Declaration. For a Living Will to be valid and legally binding, you must have full mental capacity (or be of sound mind ), at the time of completing and signing this document. Section A of this document consists of a statement declaring that you are of sound mind. It is essential that this section is signed. You should also include your date of birth and address. Your signature must be witnessed, and your witness must also provide a dated signature, and details of their date of birth and address. Your witness should be someone who is not a close family member who might expect to benefit from your will. Your witness may be someone professionally involved in your health care or legal affairs. If so, they should provide details in the space provided. If you are too physically infirm to sign, you may instruct someone to sign your name on your behalf in your presence, and in the presence of your witness. Your signature and that of your witness are further required on completion of Section B: Advance Decision. Section B: Advance Decision You must not complete or sign Section B: Advance Decision without full and careful consideration of its implications. Section B: An Advance Decision is legally binding. It expresses a desire to refuse life-sustaining treatment or resuscitation under certain highly specific circumstances. If a Doctor considers that you have prepared a valid Advance Decision then you may not be provided with medical treatment that would otherwise have been recommended. This will have the result of shortening life. Because of the terminal consequences of withholding treatment, the law requires that advance decisions are highly specific. The relevant legal provisions dealing with Advance Decisions are set out within sections of the Mental Capacity Act We summarise the impact of those sections below. 15 REF: LW 14/1/ LIVING WILLS & LIFE VAULT LTD.

16 Capacity You will see that an Advance Decision can only be made by someone who has capacity to make the decision. Capacity is a legal term defined by section 3 of the Act. In order to have capacity to take a particular decision, a person must be able to: - understand the information relevant to the decision - retain that information - use or weigh that information as part of the decision-making process - communicate that decision Capacity is issue specific, meaning that whether a person has capacity will depend upon the type of decision he is taking. For example a person with a mental disease or impairment may have capacity to take basic decisions as to what clothes they wear or what they should eat but may not have capacity to decide about more complex matters such as financial investments or end of life care. Because a decision refusing end of life treatment is very serious, the Courts require that a person should have a very clear understanding of all the relevant issues when making an Advance Decision and that the Decision is very specific both as to the treatment that is to be refused and the circumstances in which that treatment is to be refused. An Advance Decision will only be binding upon a doctor if the doctor is satisfied that the person had capacity at the time he made the Advance Decision. If there is uncertainty about the validity of an Advance Decision then a doctor is entitled to provide treatment whilst clarification is sought. This may result in a Court being required to investigate the issues. In order to reduce any uncertainty about the validity of an Advance Decision you should arrange an appointment with a medical practitioner who knows you and who can sign the certificate of capacity at Document X. That medical practitioner could be your general practitioner or, if you are suffering from some illness and are under specialist care, it might be a consultant or specialist dealing with your ongoing or planned treatment. Where the effect of an Advance Decision is to refuse treatment that would prolong your life, it will be important to demonstrate that you understood all the relevant details and information regarding the treatment options, their consequences, the consequences of withholding treatment and the prospects of new treatments becoming available. It si easier to demonstrate your understanding of all these matters if a medical professional signs the certificate of capacity and can confirm that he has discussed all the relevant matters with you LIVING WILLS & LIFE VAULT LTD REF: LW 14/1/2014

17 It is a requirement of the Advance Decision that you specify clearly both: (a) the circumstances in which treatment is to be withheld or discontinued; and (b) the treatment that you wish to be withheld or discontinued. It will be easier to provide the necessary level of specificity if you discuss the matters with your GP or specialist. Reviewing an Advance Decision You are advised to review an Advance Decision regularly and to record the fact of that review in writing and to have it witnessed. This is not a requirement of the Act but it will reduce uncertainty and it will provide reassurance for doctors who are shown your Advance Decision that the Decision is a proper and recent statement of your views about treatment. Your personal circumstances and health are likely to change and such changes may well have an effect upon a decision to refuse treatment. If an Advance Decision is written some long time before the question of treatment arises and there is no evidence of a review in the interim, a doctor may have concerns that you no longer considered the decision applied to the circumstances that have arisen. Just as there is no requirement to review a decision, there are no pre-determined intervals for review. However, it would be sensible to review an Advance Decision annually or when there are changes in your personal circumstances or health. If you suffer from an illness that it would be sensible to review the Decision and to discuss it with your treating clinicians before you embark upon any new course of treatment. With new or different treatment options, you will need to include those new circumstances or treatment options in any Advance Decision if it is to be binding upon those treating you. Withdrawing or Changing an Advance Decision As long as a person has capacity they can withdraw (cancel) or revise an Advance Decision at any time. The Act does not require any withdrawal or change to be in writing but possible we recommend that withdrawal of or changes to an Advance Decision are made in writing so as to remove any uncertainty. Those changes would have to be witnessed in the same way as the original Advance Decision details are set out below. 17 REF: LW 14/1/ LIVING WILLS & LIFE VAULT LTD.

18 We summarise the relevant sections of the Mental Capacity Act 2005 that deal with Advance Decisions below: Section 24 - An Advance Decision can only be made by someone with capacity and over the age of In an Advance Decision a person states that if at some future date when he lacks capacity, a healthcare provider intends to give him treatment, then in specific circumstances defined within the Advance Decision, that treatment should be withheld or (if it is already being provided) discontinued. - The Advance Decision does not need to be drafted in a technical way but it must be clear, specific and unambiguous. - Anyone who makes an Advance Decision can change or withdraw that decision whilst they have capacity. Section 25 - An Advance Decision is not valid if the person making it: Withdraws it whilst they had capacity; or Has, after making the Advance Decision, created a lasting power of attorney under which they confer authority to someone else to give or refuse the treatment to which the Advance Decision relates; or Has done anything else clearly inconsistent with the Advance Decision remaining his fixed decision - An Advance Decision is inapplicable if at the material time (when the decision about the provision or withholding of treatment is being taken), the person taking the decision has capacity to give or refuse consent to treatment - An Advance Decision is not applicable to the treatment in question if That treatment is not the treatment specified in the Advance Decision; or The circumstances specified in the Advance Decision are absent; or There are reasonable grounds for believing that circmstances exist which the person making the Advance Decision did not anticipate when the decision was made and which would have affected his decision had he anticipated them LIVING WILLS & LIFE VAULT LTD REF: LW 14/1/2014

19 - An Advance Decision is not applicable to life-saving treatment unless The decision is confirmed by a statement from the person taking the decision that it is to apply to that treatment even if life is at risk; and - The Advance Decision and the statement referred to above are: In writing; and Signed by the decision maker or another person authorised by him and in his presence; and The signature is made or acknowledged by the decision maker in the presence of a witness; and The witness signs or acknowledges his signature in the decision maker s presence Section 26 - If a person has made an Advance Decision which is valid and applies to a treatment then that decision has effect as if he made it and had had capacity to make it at the time when the question arises as to whether the treatment should be carried out or continued - A Court may determine whether an Advance Decision (i) exists; (ii) is valid; (iii) applicable to a treatment. The Code of Practice There is a Code of Practice to the Mental Capacity Act 2005 that tries to explain the Act in words that are easy to understand. The section dealing with Advance Decisions is at Chapter 9 of the Code (pg 159). We attach that Chapter at the end of this document. It is also available on the internet ( ) and on our own website at (hyperlink). The Advance Decision The Advance Decision that is prepared in this documentation provides you with options for which life-sustaining treatments you would wish to refuse under certain circumstances. Life-sustaining treatment may include artificially enabling you to breathe. Resuscitation may include the restoration of your heartbeat. 19 REF: LW 14/1/ LIVING WILLS & LIFE VAULT LTD.

20 You may choose to refuse all of them. You may choose to revise the form so that additional treatments or option are specifically referred to. It is important to discuss these options with your GP or any other Health Care Provider, to ensure you understand the purpose of each treatment, and the implications of refusing it. For all the reasons set out above the very grave implications of a valid Advance Decision mean that you must ensure Section B: Advance Decision is signed and witnessed. Section C: Advance Statement. This section is not essential to your Living Will, may not be legally binding, and you do not have to complete it. However, it will help all those involved in your care including Health Care Providers, family and friends - to act in accordance with your wishes, if you become unable to communicate how you would like to be cared for. You may enter any details you wish. Some options to consider are provided below. Are there any medical treatments or surgical interventions which are not intended to prolong life, and which you wish to refuse (such as blood transfusions or amputations)? Do you feel strongly that certain individuals should be present or not be present during your illness? Do you have any strong wishes regarding the nature of your daily nursing and hygiene care? Do you have any dietary requirements, whether for religious, ethical or any other reasons? Do you have strong feelings about being visited or not being visited by representatives from faith organisations (such as hospital chaplains)? Section D: Lasting Power of Attorney If you have previously granted an individual Lasting Power of Attorney (LPA), you may also have granted them the power to make decisions regarding your medical care and treatment, including whether to continue life-prolonging treatment. If you complete a Living Will including an Advance Decision after the date on which you granted an individual LPA with power to make decisions regarding your medical care and treatment, this document over-rides the wishes of the individual with LPA LIVING WILLS & LIFE VAULT LTD REF: LW 14/1/2014

21 Section D provides a declaration confirming that you are aware of the implications of making a Living Will, and that you are content for the decisions set out in this document to be your final decision. Note: if you subsequently grant another individual LPA with power to make decisions regarding your medical treatment after the date of completing this document, your Advance Decision becomes is no longer valid. Section E: Funeral Arrangements You may find it helpful to know that family, friends and those involved in your medical care are aware of your wishes as regards your funeral arrangements. Section E enables you to set out any strongly-held views you may have. You may wish to take into account any of the following aspects: Whether you wish to be cremated or buried; The religious or moral content of any funeral service; The nature of any memorial you may wish to have; and Those whom you may or may not wish to attend. Section F: Organ Donation Section F ensures that family, friends and medical practitioners are aware of your wishes regarding the use of your organs after your death. Section G: Confirmation of Declaration All decisions outlined in your Living Will, including your Advance Decision, may be revoked at any time orally or in writing. It is not necessary to confirm your commitment to your Advance Decision. It remains legally binding from the date of signature until and unless it is revoked. However, renewing your declaration on a regular basis may help your Health Care Providers and all those involved in your health care and legal affairs to be content that your wishes remain unchanged. Section G enables you to sign and date your Living Will at any time after its original signature. 21 REF: LW 14/1/ LIVING WILLS & LIFE VAULT LTD.

22 CHECKLIST Have you discussed your wishes with your GP and others involved in your health care and legal affairs? Are your family and friends aware of your wishes? Have you signed Section A: Declaration? Was your signature witnessed? Have you also signed Section B: Advance Decision? Was your signature witnessed? Have you take into account aspects of your medical treatment which will not prolong your life, but about which you have strong feelings? Are these adequately covered by Section C: Advance Statement? Have you considered the implications of granting Lasting Power of Attorney, either before or after signing your Living Will? If necessary, have you completed Section D? Have you expressed your wishes regarding your funeral arrangements in Section E? Have you made sure your wishes regarding organ donation are clearly expressed in Section F? Are you fully aware that your Living Will, including your Advance Decision, can be revoked orally or in writing at any time, as explained in Section G? Have you ensured copies of your Living Will are kept in your medical notes, either with your GP, your specialist or any other Health Care Provider? Have you ensured copies of your Living Will are given to your solicitor, family members, friends, or any others whom you wish to be aware of your decision? LIVING WILLS & LIFE VAULT LTD REF: LW 14/1/2014

23 UK Living Will Registry Tel: Web: