Advance Decision

An Advance Decision or Directive might be unfamiliar to you, but it's a significant document for those who have definite preferences regarding the medical treatment they wish to receive. It ensures that their choices are respected, even if they become unable to make decisions about their treatment.

It helps to think of an H&W LPA as giving others the right to make treatment decisions as though they were you, but an Advance Decision as you making the decisions yourself. 

These documents are commonly also referred to as a ‘Living Will’. Don’t be misled by that term, though; they have nothing to do with your Will and can’t be used to manage your assets. They are solely for decisions about your medical treatment. An Advance Statement is not legally binding, though it is usually taken into account. In contrast, an Advance Decision is legally binding.

What can an Advance Decision do?

An Advance Decision is a means of making sure your family and the professionals providing treatment to you know your personal wishes for that treatment, even when you cannot inform them yourself. This may be because you have lost capacity as a result of an illness such as dementia or even due to a temporary lack of consciousness brought about by an accident.

If you feel strongly that you would not want to receive particular types of treatment in certain situations, you can include this in your Advance Decision. If you find yourself in a situation that your Advance Decision applies to, a doctor would not be able to provide that treatment.

A typical example would be a person who would like to refuse blood products because of their religious beliefs or people who fear advanced dementia or would not want to survive a severe stroke.

What can’t an Advance Decision do?

You can’t use an Advance Decision to request certain types of treatment. While everyone has the right to refuse treatment, even if it results in their death, no one has the right to insist on a particular treatment. While you can refuse treatment, accepting that this refusal will result in your death, you can’t use this type of document to ask or encourage someone actually to help you end your life. Assisted suicide is illegal in England & Wales. 

Are they legally binding?

Advance decisions are legally binding as long as they are drafted and signed correctly and apply to the situation you are in at the time the decision to administer treatment needs to be made. You must be over 18 to make one.

To make sure your Advance Decision is legally binding, it also needs to meet the following requirements:

• It must be in writing and signed by you.
• If it makes decisions about refusing life-sustaining treatment, it also needs to be signed by an independent witness—someone who has no interest in your estate—and include a statement that you wish the Advance Decision to apply even if your life is at risk.
• It must clearly state what treatment you would refuse and in what circumstances it applies.

We would always advise that you seek our advice when making an Advance Decision rather than trying to draft it yourself. This way, you can be sure that it will be drafted correctly. 

The last requirement is that for it to apply, you can’t have said or done anything while you still had the capacity to contradict the statements you’d made in the Advance Decision. This isn’t something that can be accounted for within the Advance Decision itself, but it does mean that it’s best practice to review your document frequently. Fern Wills & Trusts can include a ‘review’ section on the last page where you can sign and date your Advance Decision at regular intervals to confirm that you’ve reviewed it and are still happy with it. 

Anything else I need to know?

We’ve already said that an Advance Decision is a powerful document, but it’s useless if no one knows it exists. We strongly recommend that a copy be given to your doctor to place on your medical records so they are aware of it if you need any treatment. We also recommend that you make your family aware of it and discuss it with them, although this may be difficult. 

This information is thanks to Siobhan Rattigan-Smith (head of The Society Of Will Writers Technical Team).

Advance Decision Vs a Health & Welfare LPA?

For your future planning needs, it's possible to have both an Advanced Directive (AD) and a Health and Welfare Lasting Power of Attorney (H&W LPA) in place. 

The Advance decision specifies which medical treatments you want to refuse, while the LPA, as the name suggests, covers a wider range of health and welfare issues.

It's important to keep in mind that having both an Advance Directive (AD) and a Health and Welfare Lasting Power of Attorney (H&W LPA) can create some logistical challenges if they contradict each other. For example, if you make an H&W LPA after creating an AD, then the attorney you appoint cannot agree to any treatment that is refused in the AD. Similarly, if the H&W LPA is created after the AD, the LPA will take precedence. To avoid conflicts, it's possible to draft an H&W LPA that takes into account the provisions of an AD, and vice versa, but it requires careful wording. Remember that the more recent document takes precedence.

When it comes to choosing between an AD and an H&W LPA, it's worth noting that an AD is a faster and more cost-effective option, as it becomes legally valid immediately upon signing. On the other hand, an H&W LPA is more comprehensive and can cover a wider range of your needs. With an H&W LPA, you can choose a health and welfare attorney who will make decisions about where you live, how and where you receive care, and your daily routine, such as your diet and clothing, in addition to your medical treatment. An LPA also has more safeguards for the donor. Many people opt for an Advanced Directive to have immediate coverage while the H&W LPA is either stored or in the process of being registered.

The case of Brenda Grant highlights just how important this is: 

The family of an 81-year-old woman kept alive against her will in 2018 received a £45,000 pay-out after the hospital caring for her misplaced her advanced directive.

Brenda Grant had an advance directive drawn up stating that if she suffered from certain ailments or lost mental capacity, then treatment should not be given to prolong her life. It also stated that she should not be given food and that any distressing symptoms should be controlled by pain relief, even if this treatment would shorten her life.

In 2012, Mrs Grant suffered a stroke that left her unable to swallow, walk, or talk. She spent almost three months in George Eliot Hospital before being fitted with a stomach peg, meaning she could be fed directly and then discharged to a nursing home. George Eliot Hospital misplaced her advance directive, losing it within a pile of medical notes. This led to her being fed artificially for 22 months despite her advance directive that refused this type of treatment.

Mrs Grant’s children weren’t initially aware of the advance directive, but her GP made them aware of it before her hospital readmission. The GP then took the side of the family and helped them argue that the advance directive should be respected. This led to treatment being withdrawn and Mrs Grant passing away four days later. 

Mrs Grant’s children decided to take legal advice to highlight the case and avoid the same thing happening to others. The George Eliot Hospital Trust admitted liability, apologised for its failure and agreed to pay the family £45,000 in an out-of-court settlement. 

Please see the NHS Guide in this link for more information.