12 Oct 2017
Author: Stephen Breen
A Living Will – technically an ‘Advance Decision’, is a legally binding document that allows you to refuse certain life sustaining treatments should you lose mental capacity in the future.
Life-sustaining treatment might include care, medicine, surgery or other help given by doctors in order to keep you alive. Some examples are:
- Artificially feeding / giving drink
- Carrying out a serious operation such as a heart bypass
- Giving treatment for cancer
- Giving antibiotics
If you complete an Advance Decision, your healthcare team has to follow it. If they were to ignore it, they could be taken to Court. However, it is important to understand that the Document is only used if you are unable to make or communicate decisions about your medical treatment – for example, because you have lost mental capacity due to a brain injury or dementia.
An Advance Decision might be worded as follows:
“This Advance Decision to Refuse Treatment sets out the situations in which I want to refuse medical treatment should I lack capacity to make or communicate that decision in the future. I have carefully considered these decisions and I confirm that I have capacity to make them. I understand that decisions about my diagnosis and prognosis will be made by the doctor in charge of my care.” (Source: Compassion in Dying)
The Advance Decision would then set out in which circumstances treatment is refused.
You have the ability to set out specifically the circumstances where you would not want to receive life sustaining treatment. For example, you might refuse treatment in the event of vegetative and/or minimally conscious states. You can still specify that you would like to receive medication to alleviate pain, even if you have refused life-sustaining treatment.
Advance Decisions and Lasting Powers of Attorney
Advance Decisions are a different and separate document to the Lasting Power of Attorney. The key differences are:
- Once an Advance Decision has been completed, signed and witnessed, it can be used immediately (in the event that you are unable to communicate your wishes). An LPA can only be used once registered with the Office of the Public Guardian which can take up to 12 weeks.
- An Advance Decision is concerned with refusal of particular treatments that you set out on the form. The LPA covers all decisions relating to your health and welfare including, for example, where you live, what you eat and who you see. You do have the ability to give your Attorney(s) the right to consent or refuse treatment on your behalf, but you don’t have to.
- An Advance Decision allows YOU to refuse certain treatments in certain circumstances. With an LPA, it is your attorney that makes the decisions for you (if you give them the power to – see below). However, you can set out preferences and instructions on the LPA form regarding treatments – and the instructions will be binding on your attorneys.
- You only need one other person to make an Advance Decision – a witness. By contrast, you’ll need an attorney, a ‘certificate provider’ (a professional who signs to say you understand what you are doing) and a witness to make an LPA.
Treatment in the Lasting Power of Attorney
If you make a Lasting Power of Attorney for health and care, you will need to complete the section on “Consent to life-sustaining treatment”. There are two options to choose from:
- 1.“I give my attorneys authority to give or refuse consent to life-sustaining treatment on my behalf”; or
- 2.“I do not give my attorneys authority to give or refuse consent to life-sustaining treatment on my behalf”.
If you allow your Attorneys to give or refuse treatment for you, they will have to make decisions that they believe are in your best interests. Without a Lasting Power of Attorney in place, your doctors will make these decisions for you.
You can if you wish set out preferences and instructions in your Lasting Power of Attorney which, for example, tell your Attorneys how to act in specific scenarios. Anything given in the ‘Instructions’ section is binding on your Attorneys.
Of note, if you are is detained under Part 4 of the Mental Health Act 1983, the consent you give to your Attorneys will not apply. Further, a Lasting Power of Attorney for Health and Care decisions will only take effect after it has been registered and after you have lost mental capacity.
Making an Advance Directive and LPA
It is a good idea to have both an Advance Directive and LPA in place. However, you need to take care that the instructions in the LPA and the Living Will do not conflict.
If you have both an LPA and Advance Decision, and these conflict, the one you made most recently will take priority. As an example, if you make the Advance Decision first and the LPA after, your attorney can override what you wrote in your Advance Decision if the LPA gives them power in relation to the decision in question (for example, if the LPA allows them to make decisions regarding life-sustaining treatment). If you have made both an LPA and an Advance Decision, it is a good idea to give your Attorney a copy of the Advance Decision.
Do I need a solicitor?
You’re not obliged to use a solicitor to make an Advance Decision or an LPA but it is advisable to do so, given that there are a number of potential pitfalls that are not immediately obvious from reading the forms. Completing the forms in a certain way will not prevent them from being registered but can render them useless – particularly if you don’t appoint your attorneys or replacement attorneys correctly, if you contradict yourself on the form, or if your Advance Decision and LPA conflicts.
Am I likely to need either document?
It is easy to fall into the trap of thinking it will never happen to you. Dementia, stroke and brain injury can affect people of all ages – and without any such documents in place, someone close to you will need to apply for a Court Order to make decisions on your behalf. This is a very expensive and lengthy process.
Despite the fact that even young people suffer from these debilitative conditions, Advance Decisions are rare – with only around 5% of people in the UK having made one. Understandably, most of us prefer not to contemplate that we would ever find ourselves in this position. However, the cost and trauma to our families if we do not put these simple legal documents in place is significant, causing substantial stress at an already very difficult time.
A recent case
The High Court recently considered the case of an elderly patient suffering from advanced dementia. The patient was unable to swallow and the hospital therefore inserted an nasogastric tube. Such tubes are uncomfortable for patients and come with a risk of being dislodged. The patient’s relatives did not want the tube to be used, and although the reason for their objection was not too clear, the Court had to weigh up the pros and cons of the treatment before concluding it should be permitted.
Ask yourself in this scenario whether you would have wanted the uncomfortable tube to be inserted, assuming that you had advance dementia. Most people will feel quite strongly one way or the other. An Advance Decision and LPA allows you to communicate these feelings.
Prior to delivering the judgement, Mr Justice Francis noted that people ought to be encouraged to make Living Wills, so that “these cases would be resolved much more easily”. Such litigation is stressful for everyone involved: the family, supporters and the medical team. The cost is also typically covered by the state. A Living Will would have allowed the patient to specify in advance whether they wanted such a treatment, without the stress and expense of going to Court.