“It’s never too early to think about the type of care you might want at the end of your life”
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Why plan ahead for your end of life care?
Death is a part of life, and it’s never too early to think about the type of care you might want towards the end of your life. If you're approaching the end of your life, or if you have a life limiting illness, it can be helpful to have conversations about what you want and communicate your feelings with loved ones and care professionals. “By having a plan in place, your loved ones and the care system can do their best to ensure you have the best quality of life possible” The most effective plans are designed and discussed with those closest to you, these are the people who know you best and they will want to play an active role in your life, right up to the end. By talking through and recording your preferences with the care system, you can shape what you want for your end of life care. For example; where you want to be cared for, where you want to be when you die, and what types of medical treatment would you like to be given, or, definitely not given. Planning ahead like this is often called “Advance Care Planning” and this campaign aims to support and empower you to begin conversations about your Advanced Care Plan, so that your choices can be recorded and shared with the people who will be supporting you at the end of your life. Once you feel ready to, you can make an appointment with your GP practice to have a conversation about your preferences and to ask any questions you may have. After your appointment the clinician will record your wishes as part of your Advance Care Plan, which will exist digitally as part of your patient record. Advance Care Planning is an umbrella term and is flexible based on individual preference. At the bottom of this page, there are links with supporting information that can help you navigate this important process. Listed below are some of the most vital bits to consider before a conversation with your GP practice. - Advance Statement about your preferences - Advance Decision to refuse treatment - Power of Attorney - setting out who can speak on your behalf - ReSPECT Plan for emergency situations
Helping you and your loved ones
Planning ahead can enable you to receive the care you want, and it can help to make things easier for your loved ones. Advance Care Planning helps those around you to understand your emotional, practical, spiritual and medical wishes. Loved ones or carers, who want to support you in the best way possible, will often want to be involved in the planning process, even if having conversations about the topic can be challenging. these tender conversations take time. Ask yourself, if you became very unwell or were unable to communicate, would your loved ones know… - What sort of funeral you would want? - Where your birth certificate is? - Where you would like to be when you die? -Would you want to be admitted to hospital? - Would you want to live in a care home or nursing home? - Are there any medical treatments you would not want to receive? - Would you like medical professionals to do everything possible to restart your heart if it stopped? These aren’t easy questions to think about, but by discussing your wishes with your loved ones or carers, you can help them, to help you. “These are some of the most important conversations and it’s never too early to start talking.” Without having these discussions, it can be very difficult for loved ones to advocate on your behalf and it can help medical teams ensure you receive the care you want. Without plans in place, end of life care may only be led by responding to emergencies. These are some of the most important conversations and it’s never too early to start talking.
How can I plan ahead?
There's no one set way of planning ahead, but there are some useful steps you can take and options to consider as part of Advance Care Planning. For example, you may find it useful to think about: • Starting the conversation with your partner, family, carers, faith leader, community or health professionals • Exploring your options, such as choosing where you want to be cared for – this will probably involve talking with healthcare professionals and other experts, especially if you have any particular questions or worries, you can do this in an Advanced Care Planning appointment at your GP practice (more details below.) • Thinking about what your wishes and preferences are. What do you already know for certain? What don't you know yet? • Refusing specific treatment, if you want to, using a legal document called an advance decision to refuse treatment • Legally appointing someone, called lasting power of attorney, to make care related decisions for you in case you're unable to do so in the future There are resources for all of these considerations below.
What to do next?
There is no step by step process and everybody has their own journey. However, if you are looking for some ideas on what to do next, please have a look through the list below. You may wish to… - Read the resources on this webpage, including; advice for having these conversations with loved ones and clinicians, and details about all the options available to you. - Share this webpage or video with people who are close to you, to encourage them to reflect on their wishes, and consider their role in your end of life care choices. - Begin to have conversations with loved ones about what matters to you. - Consider the type of care that you might want and where you would like to be during the last days, weeks, months, years of your life. - Write down what you want and how you wish to spend the end of your life. - If you feel ready to have a discussion with a healthcare professional about your plans, contact your GP practice to book an Advanced Care Planning appointment. At your appointment you can; - Discuss your plans with a clinician, ask for guiance and support with questions and concerns. Then, ensure your choices are recorded - Request to speak with your preferred clinician - Bring loved ones to your appointment - Request an interpreter
Booking an Advance Care Planning Appointment with your GP Practice
If you feel ready to have a discussion with a healthcare professional about your plans, contact your GP practice to book an Advanced Care Planning appointment. By discussing and recording your plan with a GP practice, they can work to ensure that care is co-ordinated around your preferences. At your appointment you can… - Ask for a longer appointment to ensure the conversation is not rushed - Request to speak with your preferred person/clinician (this doesn't need to be a GP). - Discuss your plans with a healthcare professional and ensure they are recorded - Bring loved ones to your appointment - Request an interpreter
Advanced Care Planning
“These are not just conversations to be had within the NHS, they’re your conversations, to be had with the people that are important to you.”
Resources
Guidance for having these conversations
Including people close to you in these important conversations isn’t always easy. Often, family and friends will find it upsetting to talk about or imagine you being very poorly and dying. They may try and avoid these discussions or change the subject, so gently explaining to them why it’s important for you to plan ahead and how it will help you, can be a helpful way of encouraging the conversation to continue.
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You could try saying something like: “'I know it isn’t an easy conversation, but I’d really like to talk to you about how I’d like to be cared for if/when I become very unwell.”
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Sometimes talking about funerals is a gentle way to broach the subject and relatable context for your loved ones who may have attended funerals in the past.
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If it doesn’t feel like talking is the best way to start, you could write them a letter and ask them to let you know when they’re ready to talk about it with you.
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Sharing the video at the top of this page may be another helpful way of beginning the conversation.
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Inviting your loved ones to attend an Advanced Care Planning appointment with you at the GP practice, can be a helpful way of including them in the conversation. Having a healthcare professional present may help with answering questions they might have and GP staff are trained to mediate conversations.
Below, are some helpful resources and guidance for having these important conversations with loved ones and healthcare professionals.
Starting Conversations about Dying:
“Life Support” is a website created to support people approaching conversations about death and dying with loved ones and clinicians. It contains carefully crafted guidance and advice, created by people with lived experience and experts working in end of life care and medicine.
How to be a Good Listener in Conversations about Dying:
Being involved in these conversations can feel emotionally heavy and take time, so it’s important to listen carefully. This resource from Dying Matters has helpful advice about how to be a good listener in conversations about dying.
[web] [print] [easy read]
For more guidance around talking about dying, please visit the Dying Matters webpage with specific resources for:
- Talking about dying if you or someone you know is living with dementia [web] [print] [easy read]
- Talking with children about dying [web] [print] [easy read]
Key Things to Consider
Do you know where you might want to be cared for at the end of your life? Have you thought about the different options and which choices are available to you?
Maybe you already know exactly where you want to be when you die, but haven’t told anybody yet.
These are really important conversations to have with your loved ones and clinicians, so that, when the time comes, your choices can be put into place as much as possible.
There are legal options too, you can record your choices about any treatment you do not want to receive through an Advance Decision to Refuse Treatment. You also have the option to appoint a Lasting Power of Attorney who will advocate for you if you are unable to do so yourself.
You can find out more about these options by using the links to the resources below.
Where Would You Prefer to be When You Die?
Exploring your options, such as choosing where you want to be cared for and where you want to be when you die, is an important part of Advance Care Planning.
It could be a hospital, care home, hospice or at home.
For example, it might be really important to you and your family, that they can care for you at home. You can ask what support is available to your loved ones who are caring for you at home, so that this can be recorded as part of your Advance Care Plan.
For more information about what options are available, please visit this page on the NHS website.
Refusing Specific Treatments:
There is an option to create a legally binding document called an Advance Decision to Refuse Treatment. This document can specify types of treatment you know that you do not want in the future.
The document lets your family, carers and health care professionals know your choices, if you aren’t able to communicate them yourself. This is a helpful option to explore with a clinician during a conversation about Advance Care Planning.
You can read clear information about making an ‘Advance Decision (to refuse treatment)’ and use a free online service that helps you to create one via the Compassion In Dying Website.
Power of Attorney:
You can nominate one or several people you trust, whether family or friends, to have Lasting Power of Attorney (LPA) for Health and Welfare. Once completed, your nominated people can make decisions for you in case you're unable to do so in the future.
Find out what this means and how to legally appoint someone you trust as your lasting power of attorney, via this helpful page of the NHS website.
Planning Ahead for Medical Treatment Options
Hospice UK have created a tool called “Planning Ahead” to help you decide what matters most to you when considering medical treatment. Some people wish to receive every treatment available to them - to live as long as possible, others might wish for no intrusive procedures, prioritising comfort, and some people sit somewhere in the middle.
This online tool is created to help you better understand different medical options that you might prefer in different scenarios. You can save the choices you select at the end and download them.
The preferences and choices you’d make can be recorded in your Advance Care Plan as part of an Advance Care Plan appointment with your GP Practice.
What is an Advance Statement?
An Advance Statement falls under the umbrella of Advance Care Planning. It is something you can write yourself and can include details about any aspect of your future health and social care that is important to you.
It isn’t legally binding, and it is up to you who you share this with. You can ask your clinician to add your Advance Statement to your medical record. More information about this can be found on this page of the NHS website.
ReSPECT Plans - For Emergency Care
One example of planning ahead, includes the ReSPECT process, where you discuss your wishes and document them, with a health care professional, in a Recommended Summary Plan for Emergency Care and Treatment (ReSPECT).
This process, and the preferences you share in this conversation are useful for guiding your doctors and other healthcare staff in making decisions about emergency treatment if you are too unwell to take part in these decisions yourself.
Find out more about how the ReSPECT process can support you to receive the end of life care that is right for you, there are resources in easy read format and multiple languages here and a helpful video that explains one patient's ReSPECT journey.
Access this page of resources and guidance for GPs, reception teams and other care professionals. Please note that this information has been designed for primary care teams in Sheffield, however most of the information is relevant to staff in any care setting.