Thinking Ahead Yellow Folder – My wishes for my advance care plan:
Frequently asked questions for people who are at their end of life
And for those who care for them

Health and social care providers in Surrey and Waveney are introducing the Thinking Ahead Yellow Folder during 2014. These FAQs will give you lots of information about the folder so that you and the people you care for can make the right choices about end of life care..

Index:

Q: What is the Thinking Ahead Yellow Folder for?

A: The Thinking Ahead folder is where people can keep a record (an advance care plan) of their preferences about their treatment and any palliative care they may need as they reach the end of their life. The folder is an important way of communicating these preferences with health and social care staff caring for the person, both now and in the future.

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Q: What is in the Thinking Ahead Yellow Folder?

A: The contents of the Thinking Ahead folder may vary from person to person, but in Surrey and Waveney the minimum content is:

  • “Thinking Ahead – introduction”
  • “Thinking Ahead – information for you”
  • “Thinking Ahead – my wishes for my advance care plan”
  • “Your guide to decisions about cardiopulmonary resuscitation” (CPR)
  • Yellow stickers to highlight the fact that someone has a pack to health and social care staff

The person and their health and social care team can tailor the contents of the Thinking Ahead folder to meet their individual needs.

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Q: What is advance care planning?

A: Advance care planning is an ongoing discussion about a person’s preferences concerning their treatment and palliative care as they reach the end of their life. An advance care plan is a record of these preferences and the shared decisions which have been made

An advance care plan may include:

  • preferences about ongoing care and support
  • where the person would like to be cared for at the end of their life
  • how any distressing symptoms should be managed
  • which elements of care they would like to receive

An advance care plan also gives the person the chance to tell people special requests and any personal arrangements they may wish to make, such as who will look after their pet.

An advance care plan is entirely voluntary and does not have to be completed if the person does not wish to do so. Although the person’s family or carer may have their own views about future care, it is important to remain impartial and allow the person to make his or her own choices. In some instances, however, these choices may need to be balanced against the safety of the person and other family members.

Please note that an advance care plan is not legally binding. If the person wants to include specific decisions about refusing treatment or care in advance, they can complete an advance decision to refuse treatment which is a legally binding document. They may also want to consider making a lasting power of attorney where another person is given legal authority to make decisions (either financial and/or medical matters) on their behalf if they are unable to do so.

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Q Who fills it in?

A: It can be filled in by the person with their family, or if the person wishes, they may choose to discuss their advance care plan with a member of their health and social care team (for example a care home manager, district nurse, GP or social worker).

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Q: Who should the advance care plan be shared with?

A: The advance care plan can be shared with family and health and social care staff, such as a GP, district nurse or care home manager, so that they can help make sure that the person’s preferences are met.

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Q: When should an advance care plan be completed?

A: An advance care plan can be completed at any time, for example as part of retirement planning, or when completing lasting powers of attorney documentation. They are often completed following a change of circumstance, such as after a period of ill health or bereavement.

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Each GP practice has a regular meeting where the care of palliative patients is discussed; this discussion may include the advance care plan. If a care plan is not in place then a member of the health and social care team may approach the person to ask them if they wish to complete one. If a person is living in a care home, this conversation may be initiated by the care home manager. If a person is in a hospital, their doctor, ward sister or specialist nurse can support them to complete an advance care plan.

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Q: Is there any support available for people who want to plan their own care or to help someone else to complete their advance care plan?

A: A person may feel they want to complete their advance care plan on their own, or they may wish to discuss it with someone. Advance care planning is all about listening to a person’s preferences and helping them to work through the related decisions about their treatment and care, and to document them if they wish. Finding the right words to start the conversation can be hard, so it is often best to let the person take the lead, listen carefully and follow their cues.

There is a wide range of information about local support services and issues related to death and dying available on this website. Information about palliative care training (including advance care planning) courses for health and social care staff can be found on the Surrey and Kent Palliative Care Academy’s Learning Location website. Additional help may also be available to care for the person or support their carer.

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Q: What if a person changes their mind once the plan has been completed?

A: A person can change their mind about their preferences at any time, which is why it is important to review the contents of the advance care plan regularly to make sure the person is still comfortable with it. Advance care planning is not a one-off event, but an ongoing process of discussion and shared decision making.

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Q: Does the advance care plan have to include resuscitation wishes?

A: No, but anyone who wishes to should be given the opportunity to discuss resuscitation with a member of their healthcare team. It may be that thinking about future planning naturally leads to discussions about resuscitation, but it is quite possible to make an advance care plan without any reference to resuscitation. Completion of a “do not attempt cardio-pulmonary resuscitation” (DNACPR) form is carried out by a doctor or senior nurse. If a DNACPR form is in place, it should be kept in the Thinking Ahead folder, and health and social care staff should be made aware of it. This is important as under the law, an attempt at resuscitation must be performed unless the form is sighted by a person’s healthcare team.

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Q: What if the person who wants to have an advance care plan does not have the capacity to make these decisions (problems with memory or decision making)?

A: Some people who want an advance care plan may have problems with their memory or decision making. If this is the case, a “best interests meeting” will be held with the person, their family or members of staff who know what their preferences would be in this situation. There is an adapted version of the advance care plan for people who lack capacity, while further information about the Mental Capacity Act can be found at http://www.nhs.uk/CarersDirect/moneyandlegal/legal/Pages/MentalCapacityAct.aspx

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Q: Where can you get a Thinking Ahead Yellow Folder or advance care plan?

A: You can download the contents of the folder from the Diversitaywebsite (www.diversitay.org.uk) or you can ask for a pack from your GP practice.

Health and social care staff working in West and Central Surrey can order folders from Surrey Central Stores at Hellesdon, while care home managers can request a folder from the resident’s GP practice, and may also find it helpful to involve the GP, district nurse or social worker in advance care planning discussions.

If the person is in hospital you can ask the doctor, ward sister or specialist nurse for a folder.

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Q: Are the documents available in other formats?

A: Additional formats are available, including translations into Portuguese, Lithuanian, Russian and Polish. In addition, there are also audio and easy read versions of the “Thinking Ahead – information for you” and “Your guide to decisions about cardiopulmonary resuscitation (CPR)” which explain advance care planning in simple language.

If you want to request the documents in another format please call 01603 751638.

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Q: Does the person need to complete all of the documents?

A: The person does not need to read all of the leaflets or complete the advance care plan all at once, nor at all if they do not wish to do so. Time is needed to think about and discuss their wishes and record only as and when the person is able or wants to.

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Q: Can additional information be added to the folder?

A: Yes. Lots of organisations have different leaflets and care plans, such as the “This is Me” Alzheimer’s Society form, personal budget plan or carers assessment of needs form, or information related to housing support, dementia or learning difficulties. It would be helpful to keep all of these documents together so that the health and social care staff involved in the person’s care are aware of all aspects relating to their needs. This must only be done with the person’s permission.

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Q: Where should the Thinking Ahead Yellow Folder be kept?

A: There is no hard and fast rule as to where it should be kept, but it should be easy for health and social care staff to find, such as on the mantelpiece or by the phone. Stickers are available to put on the inside of the front door (making sure it is not visible from the outside) so that care staff know who has an advance care plan in place. A further sticker could be put near to where the pack is kept. If the person is using the “message in a bottle” scheme, they can add a note at the bottom of the form to let health and social care staff know that they have an advance care plan and where it is kept.

Please note that the stickers are optional and should only be used if the person wishes to do so. If there is a DNACPR form in place it is very important that it is included into the folder and that this is clearly visible for health and social care staff to find, otherwise it cannot be implemented.

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Q: How does the Thinking Ahead Yellow Folder relate to other electronic care plans?

A: Electronic patient records (at the local GP practice or when in hospital) need to be updated to show a person has an advance care plan so that health and social care staff are aware of this. It is important that the person’s family are also aware so that if their care setting changes, (for example they are admitted to a hospital) they can take their Thinking Ahead Yellow Folder with them.

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Q: Where can I find out more information about issues related to death and dying?

A: There is a wide range of information available about local support services and issues related to death and dying on this website.

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Q: Where can I find out about palliative and end of life care training?

A: There is a wide range of information about palliative care training (including advance care planning courses) for health and social care staff on the Surrey and Kent Palliative Care Academy’s Learning Location website. www.learncare.org

Please speak to a health or social care professional if you require further information.

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