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Advance Decisions
Have you made plans for future care?
Update September 2023 – new Advance Decision service from Compassion in Dying
None of us knows what the future will hold for us, but we can take steps to ensure that our wishes are recorded and taken account of when it comes to care and end of life treatment.
An Advance Decision is the way to do this, and Compassion in Dying has just rebuilt their free online Advance Decision maker to make it as straightforward and user-friendly as possible.
They first launched the service in 2016, since when 34,000 people have used it to record their wishes.
Investing in technology
As with any digital product, continued investment is vital to ensure it remains high quality and meets people’s needs in an evolving technology landscape.
Compassion in Dying have taken feedback from people who used their original service and have re-built it to make it even easier for people to make and record important treatment decisions that are right for them.
Developed in partnership with people, clinicians and legal professionals the new service has been developed using the GOV.UK Design System (external link will open in a new browser tab or window). All the components and patterns have been carefully tested with the most commonly-used assistive technologies and built to meet level AA of the WCAG 2.1 accessibility standards.
They have worked with a technology partner to build the service in such a way that it can be white-labelled by others, for free. Whether that’s another charity working in this space, or an ICB looking to develop their electronic end-of-life record.
Compassion in Dying say that they are sharing openly in this way so that as many people as possible are able to plan for the end of life. Their mission is to make sure everyone gets the information they need to be in control of their end-of-life decisions, regardless of who they turn to for support.
You can access the online service here (external link will open in a new browser tab or window)
Advance Decision or Lasting Power of Attorney For Health and Welfare
Fewer than one in ten people have recorded their wishes in a legally binding way, either by making an Advance Decision (‘Living Will’) which allows someone to state whether they want to refuse life-prolonging treatment in certain circumstances (4%), or by making a Lasting Power of Attorney for Health and Welfare to appoint a trusted person(s) to make healthcare decisions on their behalf (7%).
This means that doctors may be left to make important decisions without knowing a person’s values and preferences.
Advance Decision to refuse treatment
This is sometimes also known as a living will or advance directive, but the legal name is advance decision to refuse treatment.
It is legally binding in England and Wales but not in Scotland and Northern Ireland.
However, regardless of where you live, it is always best to have your wishes clearly written down so your doctor knows about any treatment you do not want to be given.
Making an Advance Decision is easy
An Advance Decision allows you to record any treatments that you do not want to be given in the future, in case you later become unable to make or communicate decisions through injury or illness.
It allows you to remain at the heart of these choices, giving you peace of mind that if the worst does happen your wishes will still be followed.
If you would like to be given all treatment available then you can write this in an advance statement.
It will only be used if you cannot make or communicate a decision for yourself.
Form to make the process as easy as possible
Compassion in Dying has a form template you can use to record your wishes.
It takes you through different conditions in which you could lose capacity or the ability to communicate, so that you can record your treatment wishes for each scenario clearly and concisely.
It also includes a section in which you can state other wishes and preferences, such as where you’d like to be cared for, and your wishes regarding pain relief, pregnancy and organ donation.
It is free, straightforward, and doesn’t require a solicitor.
There is space to include details of your Lasting Power of Attorney for Health and Welfare or anyone else you want to be involved in your care.
In the event that you already have an Advance Decision in place, there are instructions on how to amend it to include your wishes on treatment for COVID-19.
You can access the online service here, or if you prefer, download a form to fill in by hand. Links will open in a new browser window. You can also have a copy sent to you by post.
Complete an Advance Statement or Lasting Power of Attorney for Health and Welfare
Another option is to make a Lasting Power of Attorney for Health and Welfare – appointing a trusted person to make decisions about your treatment or care on your behalf, should you become unable to.
Contrary to popular belief, family members have no automatic right to enforce their loved one’s wishes – a misconception that can be the source of much heartache. Instead it falls to doctors to make best interest decisions about a patient’s care and treatment.
Having your wishes for care and treatment set out in an Advance Decision or other legal mechanism, means that if you become unable to make your own decisions, you can have peace of mind that your wishes will be known and followed.
Your family won’t be left stranded. Your doctors won’t be left to make decisions without knowing what you would or would not have wanted. Quite the opposite – by recording your wishes in a legally binding way, you can make it your decision.
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Further reading and resources
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Specialist information and support about planning ahead is available from Compassion in Dying. There is a free information line at 0800 999 2434 or you can visit the website compassionindying.org.uk/
You can order a free copy of Planning Ahead here
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