Thinking about planning ahead for end-of-life?
There is a lot to think about, even if doing so is not comfortable. Do you want life to be prolonged or at all costs or is comfort and dignity more important to you? Have you made a will? Do those close to you know your wishes or will they have to guess?
There may come a time when you become unwell and can’t tell people around you what you do and don’t want. Planning ahead is a way to record your wishes so that, when that time comes, your preferences are known and can be followed.
Planning ahead gives you control over your future care and treatment and can
be a good way to start conversations with people close to you about what you want in the future
help you make informed decisions in your own time by considering your options
give you peace of mind that you have taken steps to make sure your wishes are known about, recorded and respected.
The information below will help you set out your end of life treatment and care plan. There is also useful information to help you plan and communicate your funeral wishes and manage your digital legacy.
Tools to help you to set out your wishes on end-of-life treatment and care
There are several documents that help to record (and enforce) your wishes. (Please note they apply to England and Wales. Scotland and NI have different arrangements.) You can create these documents yourself (see the internet resources section below) although for some you may wish to seek professional advice, such as from a solicitor.
1. Advance Decisions (or Living Will)
What is an advance decision?
An Advance Decision is a legally binding refusal of treatment made in advance and only comes into effect if you lose the ability to make decisions for yourself (It is not legally binding in Scotland or NI).
If a healthcare professional knows you have made an Advanced Decision, they have to follow it or could be taken to court if they ignore it.What does it cover? It can be used to refuse any treatment you chose including resuscitation, breathing machines, antibiotics or feeding tubes.
How do I prepare an advance decision?
It is wise to discuss your thoughts with your clinician. A lawyer can assist but the decision can still be legally binding so long as it is signed and witnessed (Please note there are temporary Covid arrangements in place to forgo a witness signature and substitute a statement that it is impossible to obtain one). Online and hard copy advance decision templates are available from Compassion in dying.
Safekeeping? It is wise to let the following know your wishes :-your family and friends who might be contacted / your GP surgery asking for it to be added to your medical notes/ Anyone else involved in your care eg consultant/ palliative care team or paid carers.
Let them know your intentions and, if you cannot make a copy, where to find your advance decisions in a safe place.
2. Advance Statements (or statement of wishes)
What are Advance Statements? They are much wider in scope than advance decisions and should be written down. They are a general statement of what you want and what is important to you (eg food preferences, religious beliefs, daily routine). They help people involved in your care to understand what you want and what is important to you if you cannot speak or make decisions.
Are they legally binding? No - They are not legally binding but should be taken into account by health & care professionals when deciding what is in your best interests.
Safekeeping Again it is wise to share your statement with those you love and let them know where to find it.
Online and hard copy advance statement templates are available from Compassion in dying.
3. Advance Care Plans
What are advance care plans? They are plans that record your care and treatment wishes eg where I want to receive care, where I want to die, who I want to be with me and my religious or spiritual preferences. The most common type of end-of-life care plan is a Preferred Priorities for Care (PPC) document. If you have made an Advance Decision, Advance Statement or Lasting Power of Attorney ( see below) this should be noted in your Advance Care Plan.
When and how are they prepared? Advance care planning offers people the opportunity to plan their future care and support, including medical treatment, while they have the capacity to do so and is especially important when you enter the end of life phase.
Are they legally binding? No but it helps people involved in your care to know what is important to you. Doctors will try to follow your wishes and take the plan into account when deciding what is in my best interests.
Safekeeping? This plan is normally kept in your GP notes. There should be arrangements for transferring it to hospital but if you are admitted to hospital it is a good idea to check that this has actually happened.
Templates and more advice are available from Compassion in Dying (follow this link)
4. ‘DNAR’ (do not attempt resuscitation)
This is a document that is issued and signed by a doctor, telling your medical team not to attempt cardiopulmonary resuscitation. It should have been discussed either with you or with a close relative or representative. If you have already stated your wishes in one of the ways set out above these must be taken into account, but bear in mind that healthcare staff cannot be forced to provide treatment, including resuscitation, if they genuinely believe that there is no possibility of you benefiting from it. As a result there is no such thing as an 'always attempt resuscitation' notice.
5. 'ReSPECT' form
Short for "Recommended Summary Plan for Emergency Care and Treatment" (emergency end of life treatment)
Completed in partnership with your GP or with hospital doctors to record your wishes concerning emergency care and treatment. This for has recently been widely adopted across the health service; it covers 'DNAR wishes and whether you would prioritise comfort and dignity, even if that might shorten your life, or if you wish care staff to make maximum efforts to prolong your life even if that may cause you distress. Click here for more information about the ReSPECT form. You can print off a PDF version of a ReSPECT form V2 here
6. Treatment Escalation Plans
These are part of your healthcare record and records which treatments would and would not be helpful if you become unwell while in hospital. They are written by your healthcare team and may be updated as your circumstances change, but they should always reflect your wishes. If your condition means that you are not able to express an opinion they should bear in mind any instructions you have already made (see above) or conversations with you and/or family, friends and carers, if you would like them to be involved.
7. Donating organs and tissue
You have the right to decide what may happen to your body after death. If you wish to donate, you have the choice of what to donate. Donation of whole organs (e.g. kidneys, lungs, heart) and donation of tissues (e.g. bone, corneas, skin) involve different requirements. However, the circumstances may make it impossible to use your organs or tissue; for example, most organ donations have to be completed very soon after death and will not proceed if any serious infection or cancer is involved. Restrictions around tissue donation can be more flexible.
Please be aware that although your wishes are paramount in law, in practice most organ donations will also require the consent of your next of kin. So make sure you have discussed your wishes with your family.
How to donate tissue or organs: Register yourself on the NHS Organ Donation Register and let those close to you know.
If you wish to donate your whole body to science or to train medical professionals there are different rules; you need to contact the Medical School of your choice. The Human Tissue Authority provides more information and holds a list of Medical Schools.
Formal legal documents
For more detailed information about the legal documents listed below, please click here.
1. Lasting Powers of Attorney
What does an LPA do? It gives legal power from you “the donor” to another person(s), called “the attorney(s)”, to make decisions on your behalf . So your attorney must be someone you trust to act as you would want them to and make decisions on your behalf.
There are two types of LPA and both schemes are administered through the Office of the Public Guardian.
Health & Welfare Lasting Power of Attorney: This allows you to chose a person(s) to make decisions eg daily routine, where you are cared for, treatments that keep you alive . These powers will only be used when you are incapable of making your own decisions.
Property and financial affairs Lasting Power of Attorney: This allows you to choose one person(s) to make decisions about eg collecting benefits, paying bills or selling property. If you give them permission, they can start using this power straight away.
2. Making your will
While wills can be made without a lawyer in extreme circumstances you are strongly advised to seek the services of a solicitor. See the relevant section on the DMiR website (by following this link) for more information.
Helping you prepare for the end of life. How to talk about it, plan for it, and record your wishes. Detailed instructions and relevant forms are available for advance decisions, advance care plans, lasting power of attorney etc.
Tel: 0800 999 2434.
For people living with any terminal illness, and their families, we offer expert care, guidance and support, free of charge, to help them get the most they can from life, in the time that they have left.
Marie Curie, Corby Tel: 01536 400943
A coalition across England and Wales, which aims to help people talk more openly about dying and death and bereavement, and to make plans for the end of life.
Helping you prepare for the end of life. How to talk about it, plan for it, and record your wishes.
Tel: 0800 999 2434.
Advance care plan – Made in partnership with your GP to record your care and treatment wishes as you near end of life
Advance care planning - Planning your future care – information booklet for the public
How can I live well with my diagnosed condition?
What about your Digital legacy?
Times have changed with many of us having most of our information digitally. Our digital legacy is all our information that we have left online. his may include photos, blogs and listings about the person, their social media profiles, gaming profiles and bank accounts.
Its important to think about what you would like to happen to yours you will need to make sure you have left information as to your passwords and would you like to keep your social media accounts active. There is lots of useful information available via these links, to help you think about what is right for you:
Your funeral wishes
You may or may not have thought about what you would want for your funeral. It can be difficult to know where to start as there are many decisions to make such as; do you want to be buried or cremated, would you like it to be a celebration of your life, what music would you like these are all important questions. My funeral wishes helps you to think about what works best for you and for your loved ones.