Planning Ahead. A guide for patients and their carers

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1 Planning Ahead A guide for patients and their carers Somerset Health Community January 2015

2 Planning ahead Content Page Introduction 3 Key references and useful websites 4 Section 1 Preferred priorities for care 5 Section 2 Putting your affairs in order and making a will 9 Section 3 Appointing someone to make decisions for you in the future 12 Section 4 Writing an advance decision (living will) 13 Useful phone numbers 19 Page 2

3 Planning ahead Planning ahead A guide for patients and their carers This guide has been put together by professionals working in palliative care and is designed to help you think ahead and to help you make any practical arrangements or decisions in advance of a crisis. We recommend that you talk through the issues raised with a friend, family member, doctor or nurse. This will help you to be clear in your decision-making and help ensure family and professionals are more aware of your wishes and concerns. We have found that the most useful part of the whole process is having the discussions about the future. The forms at the back of each section are for you to use if you wish. The completion of the forms should not become a goal in itself. There may be certain parts that are more relevant at any one time. However, it may be appropriate to come back to the other sections at a later date. This booklet is divided into four sections: 1. Preferred priorities for care - your advance wishes 2. Putting your affairs in order and making a will 3. Appointing someone to make decisions for you in the future 4. Writing an advance decision These do not need to be worked through as an exercise. Section1: Preferred priorities for Care is a very useful basic document, which we would encourage as many people as possible to complete. This gives an overview of your wishes for how you would like to be cared for. Appointing someone to make decisions for you, (a lasting power of attorney), or writing an advance decision, is something which is likely to be appropriate for only a minority of people. These are legal processes and documents and it may be helpful for you to know they exist. You can talk in detail with your specialist palliative care or hospital nurse or doctor, your GP, or your community nurse, about whether this is something which would be useful for you. Page 3

4 Planning ahead Key references and useful websites Dorothy House Hospice: Dorothy House 24 hour advice line: St Margaret s Hospice: St Margaret s Hospice 24 hour advice line: Weldmar Hospice: Weldmar Hospice 24 hour advice line: Weston Hospice: Weston Hospice 24 hour advice line: Planning for your future care a helpful leaflet: Somerset end of life website: Page 4

5 Preferred priorities for care 1. Preferred priorities for care Your advance wishes* What is this document for? The preferred priorities for care, also known as PPC, can help you prepare for the future. It gives you the opportunity to think about, talk about and write down your preferences and priorities for care at the end of your life. You do not need to do this unless you want to. The PPC can help you and your carers (your family, friends and healthcare professionals) to understand what is important to you when planning your care. If a time comes when, for whatever reason, you are unable to make a decision for yourself, anyone who has to make decisions about your care on your behalf will have to take into account anything you have written in your PPC. Sometimes people wish to refuse specific medical treatments in advance. The PPC is not meant to be used for such legally binding refusals. There is a separate section about this called Writing an advance decision (see page 13) and it would be advisable to discuss this with your doctors if this is something you wish to pursue. You may find that your feelings about your care change over time. This is entirely normal and simply reflects that different things become more or less important at different times and that we do not always cope or respond as we expect in a given situation. You should ensure that any plans you make are kept as up to date as possible. Should I talk to other people about my PPC? You may find it helpful to talk about your future care with your family and friends, although sometimes this can be difficult because it might be emotional, or people might not agree. Often just having this discussion can be very useful, just to get these difficult issues out in the open. It may be helpful to talk about any particular needs your family or friends may have if they are going to be involved in caring for you. Your professional carers, like your doctor, nurse or social worker, can help and support your family with this. Will my preferences and priorities be met? What you have written in your PPC will always be taken into account when planning care. However, sometimes things can change unexpectedly (like carers becoming over-tired or ill), or resources may not be available to meet a particular need. *(Adapted from National Preferred Priorities for Care document) Page 5

6 Preferred priorities for care What should I include in my PPC? Here are some things you may wish to consider: Where do you think you would like to be cared for if you are dying? (Hospital, nursing home, hospice, at home) Remember, you may find that when the time comes, your preferred place of care may not be an option. This could be due to the level of nursing required, lack of beds, need for hospital tests etc, or you may have changed your mind as to what is most suitable. However, this should not stop you considering your preferred care place. Whether you would want to be told when you are close to death (Assuming your doctors are able to predict this), and whether you want other people to know. Who should talk to any children, or other close family such as elderly parents, about your impending death if you are unable to do so? Who should look after your pets? How you want your final days to look and sound? (Flowers, pictures, photos, music, TV, radio etc) Who would you wish to visit you near the end? Is there anything that you would not want to happen to you? (For example being admitted to hospital, being told you are dying etc) Do you have any cultural, spiritual or religious needs that you would wish to be respected? Organ donation and medical research Would you want to donate certain organs such as your corneas, or to consider donating organs for medical research? You will need to sign specific documentation for this. There is a PPC form attached which you may wish to complete and share with family and the healthcare professionals looking after you. Some people find it helpful to record some thoughts and wishes around funeral arrangements too. There is a form covering details of funeral planning included as part of this information pack. Page 6

7 Preferred priorities for care Preferred Priorities for Care Document (A non-legally binding document to represent your future hopes and wishes) Ideally, you should keep this document with you and share it with anyone involved in your care. Please make copies for GP or district nursing notes and palliative care notes. Your name:... Address: Postcode:... Do you have a living will or advanced decision to refuse treatment? Yes / No If yes please give details (who has a copy?) Proxy / next of kin Who else would you like to be involved if it ever becomes difficult to make decisions? Contact 1... Relationship to you... Telephone... Do they have lasting power of attorney for personal welfare? Yes / No Contact 2... Relationship to you... Telephone... Do they have lasting power of attorney for personal welfare? Yes / No Do you have any special requests or preferences regarding your future care? If your condition deteriorates, where would you most like to be cared for? Page 7

8 Preferred priorities for care Is there anything you would ideally like to avoid happening to you? Do you have any comments or wishes that you would like to share with others? Are you happy for the information in this document to be shared with other relevant healthcare professionals? Yes / No Are you happy for the information in this document to be added to the electronic palliative care coordination system? Yes / No (please ask for details) Patient signature:... Date:... Witness:... Next of kin or carer signature (if present): Date:... Details of any other family members involved in advance care planning discussions. Details of healthcare professionals involved in advance care planning discussions. Reviewed on (give dates): Remember to regularly review whether this document still represents your wishes. Sign and date any changes you make. Page 8

9 Putting your affairs in order 2. Putting your affairs in order and making a will This is for personal use only. If you wish to use this list please remove it from the booklet and keep it somewhere safe. It is worth asking yourself, how easy is it for my next of kin to find all my important documents if I become ill, or die suddenly? How can I make it easier for them? This will save your family having to search through piles of paper to find the information they need, at a time of great stress. The instructions could include: Details of your bank, building society, credit cards, pension, tax district and any other financial contacts Telephone numbers and addresses of close (and distant) friends, family and colleagues Where you keep documents such as passport, house deeds, insurance, life and other policies, mortgage and hire purchase agreements, birth and marriage certificates There is a form overleaf which you may find useful to start documenting some of this practical information. We suggest this is kept in a safe place. There is also a check-list form to help when considering funeral plans. It can be helpful to discuss your thoughts with your faith leader, the hospice or hospital chaplain, or a funeral director. Writing a will Dying without leaving a will may cause problems for your relatives, often needing lawyers to sort them out. A do-it-yourself will form bought from a stationers or via the internet can be fine for straightforward situations, but bear in mind that a will is a technical and legal document and mistakes cannot be corrected after your death. The Law Society recommends that a will should be drawn up with face-to-face advice from a specialist solicitor. It may be helpful to start by making a list of all your possessions and the people or charities you want to provide for, including any property you may wish to divide in a certain way. A will can name guardians for any dependent children and record your wish to leave money or property in trust for children or grandchildren. Think about arrangements for the care of pets or other responsibilities. Page 9

10 Putting your affairs in order Putting your affairs in order check list Information you may wish to start putting together This is for personal use only. If you wish to use this list please remove it from the booklet and keep it somewhere safe. Bank details Account number Details Place Kept Insurance policies Credit cards Pension Passport Birth and marriage certificates Mortgage Hire purchase agreements Will Other important documents or contacts such as solicitors Page 10

11 Putting your affairs in order Funeral planning Person I wish to be responsible for making my funeral arrangements Details My preferred funeral director is My pre-paid funeral plan is with I wish to be buried or cremated I wish my funeral service to be at My wishes for music to be included in the service are I would like the following hymns or readings to be included I would like the following person(s) to conduct the service if possible Other details and information you would like to record such as donations to named charities, flowers, people to be informed Page 11

12 Appointing someone to make decisions 3. Appointing someone to make decisions for you in the future If you become unable to participate in decision-making at any point we, as healthcare professionals, will do everything possible to help you (such as hearing aids, large print, use of interpreters, etc). However, if we feel you still do not have the ability to be involved in decision-making, then a decision would be made that was considered to be in your best interests. Your next of kin and key carers, as well as the multi professional healthcare team, would all contribute to these discussions. For most people this way of making decisions is a good one. Patients with certain conditions, such as advancing Alzheimer s, are able to anticipate that they will deteriorate mentally. They may want to stipulate that a particular person can make decisions on their behalf when they are no longer able to do so. Such a person is given lasting power of attorney (LPA). The person you choose can be a friend, relative or professional. You can choose more than one person to act as an attorney on your behalf. Your LPA is specific to you - you decide who will have the power to control your affairs and the precise limits of that power. There are two types of LPA: Property and affairs LPA Such a person(s) can make decisions about financial matters such as selling your house or managing your bank account. They can do this as soon as the LPA is registered, even though you may still have capacity to make decisions. However, you can state that you only wish them to make decisions for you after you lose capacity. Personal welfare LPA Such a person(s) can make decisions about your health and personal welfare, such as where you should live, day-to-day care, or having medical treatment. A personal welfare LPA will only take effect when you lack capacity to make decisions. Forms are available to download from the Office of the Public Guardian You can also ask for the forms to be sent to you by post. The application has to be registered with the Office of the Public Guardian in order to be valid. You can appoint an attorney without a solicitor but the process is quite complex. Do remember that engaging a solicitor may incur significant cost. Page 12

13 Writing an advance decision 4. Writing an advance decision (living will) An advance decision to refuse treatment, also known as an ADRT, is different from preferred priorities for care, as it is a formal, legally binding document which allows an individual to refuse certain treatments. It does not allow for a request to have life ended and cannot be used to request medical treatments. An ADRT is very specific and is used in situations when particular treatments would not be acceptable to someone. An example would be if a person had a severe stroke which resulted in swallowing problems. If the thought of being fed by alternative methods was not tolerable then this could be documented formally as an ADRT. If you are considering making an ADRT, it is recommended that you seek advice from healthcare professionals (such as your GP or the person most closely involved with your current healthcare or treatment), or from an organisation that can provide advice on specific conditions or situations. You might also wish to consult with a solicitor. Refusal of treatment can be written or verbal, but if it includes the refusal of life sustaining treatment, it must be in writing, signed and witnessed and include the statement even if life is at risk. If you are unable to write, you may choose someone to sign the form for you. An ADRT will only be used if, at some time in the future, you lose the ability to make your own decisions about your medical treatment. To be valid, an ADRT must be made before you lose your ability to make such decisions. You can change your mind about your advance decision, or amend it at anytime, provided you still have the capacity to do so. Further Information National End of Life Care Programme guide to ADRT: Information about the Mental Capacity Act: National charities that have helpful information Alzheimer s Society: Age UK: Dying Matters: Motor Neurone Disease Association: Page 13

14 Writing an advance decision Documentation You will need up to five copies of this completed form: One for you to keep One for your GP to keep with your records One to be kept with someone who you wish to be consulted about your treatment should this ever be necessary (such as next of kin, solicitor) One to be kept with your palliative care team, community palliative care nurse/ hospice team/district nurse/mental health team and care home, as appropriate One for your hospital consultant Please also ask the healthcare team to add the information in this document to the electronic palliative care co-ordination system. This is an electronic communication system held by the Ambulance Service, available to the GP Out of Hours Service, hospices, district nurses and some departments at Yeovil District Hospital and Musgrove Park Hospital. The ADRT should be signed and dated. Your signature should be witnessed by someone who is not a close relative or expecting to benefit from your will (such as a healthcare professional). You might also wish to consult with a solicitor. Remember to review this document at regular intervals to ensure it still represents your wishes. Signing and dating at the bottom, when you do this, will indicate how recently you have thought about it. If you change your mind about anything you have written, tell your GP, hospice nurse, next of kin or appointed representative and amend the document accordingly. Page 14

15 Writing an advance decision Advance decision to refuse treatment (ADRT) My name If I become unconscious, these are the distinguishing features that could identify me: Address Date of birth: NHS number (if known): Hospital number (if known): Telephone number: What is this document for? This advance decision to refuse treatment has been written by me to specify in advance which treatments I don t want in future. These are my decisions about my healthcare, in the event that I have lost mental capacity and cannot consent to refuse treatment. This advance decision replaces any previous decision I have made. Advice to the carer reading this document Please check Please do not assume that I have lost mental capacity before any actions are taken. I might need help and time to communicate when the time comes to need to make a decision. If I have lost mental capacity for a particular decision check that my advance decision is valid, and applicable to the circumstances that exist at the time. If the professionals are satisfied that this advance decision is valid and applicable, this decision becomes legally binding and must be followed, including checking that it has not been varied or revoked by me either verbally or in writing since it was made. Please share this information with people who are involved in my treatment and need to know about it. Please also check if I have made an advance statement about my preferences, wishes, beliefs, values and feelings that might be relevant to this advance decision. Page 15

16 Writing an advance decision This advance decision does not refuse the offer or provision of basic care, support and comfort. Important note to the person making this advance decision If you wish to refuse a treatment that is (or may be) life-sustaining you must state in the boxes I am refusing this treatment even if my life is at risk as a result. Any advance decision that states that you are refusing life-sustaining treatment must be signed and witnessed. My name: I wish to refuse the following specific treatments: In these circumstances: My signature: (or nominated person) Date of signature: Page 16

17 Writing an advance decision Witness Witness signature: Name of witness: Address of witness: Telephone of witness: Date: Person to be contacted to discuss my wishes Name: Address: Relationship: Telephone: I have discussed this with Name (eg name of healthcare professional): Profession / job title: Contact details: Date: I give permission for this document to be discussed with my relatives / carers Yes No (please tick one) Optional review Comment: Date/time: My signature: (or nominated person) Witness signature: Page 17

18 Writing an advance decision The following list identifies which people have a copy and have been told about this advance decision to refuse treatment (ADRT) Name Relationship Telephone number Further information (optional) I have written the following information that is important to me. It describes my hopes, fears and expectations of life and any potential health and social care problems. It does not directly affect my advance decision to refuse treatment, but the reader may find it useful, for example to inform any clinical assessment if it becomes necessary to decide what is in my best interests. Original source National End of Life Care Programme January 2013: Advance Decisions to Refuse Treatment: a Guide for Health and Social Care Staff (2008). Adapted by the North East Deciding Right Programme with permission from National End of Life Care Programme. Page 18

19 Useful numbers Useful numbers Bristol Tissue Co-ordinator Dorothy House Hospice Dorothy House Hospice 24 hour advice line Musgrove Park Hospital End of Life Coordination Yeovil District Hospital End of Life Discharge Liaison Nurse St Margaret s Hospice 24 hour advice line Weldmar Hospice 24 hour advice line Weston Hospice 24 hour advice line Your own useful numbers Page 19

20 Somerset Clinical Commissioning Group Wynford House Lufton Way Yeovil Somerset BA22 8HR Phone: Fax: Website: This guide is adapted from Planning Ahead published by Weston Hospice, Ref 0902V2 It is available in other formats or languages by phoning

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