What Happens If You Are Left In A Minimally Conscious State? Charity launches campaign to urge everyone to consider making a living will

Compassion in dying
Compassion in dying
Make It Your Decision campaign launched to encourage Brits to ensure their wishes are respected should illness or accident mean they are unable to communicate the kind of treatment or care they wish to receive

UK charity Compassion in Dying are today launching a nationwide campaign to urge people to prepare for the unexpected and make plans about their medical treatment and care in the event they are incapacitated and unable to express their wishes.

According to new research commissioned by the charity, a third (32%) of people said they worry about what care they would be given if they suddenly lost the capacity to make their own decisions, and over a fifth (22%) worry that they’d be given medical treatment they would not want.

As such, the Make it Your Decision campaign aims to stimulate debate around end-of-life care and help people to understand their rights in case the worst happens.

One way to insure against this eventuality is to complete an Advance Decision To Refuse Treatment, sometimes known as a ‘living will’ or ‘advance directive’.

This allows a person to dictate the treatment they would not want to receive in certain circumstances if they were to lose capacity to make or communicate decisions about their medical treatment or care in future.
Compassion in Dying estimates that as few as 4% of people currently have an Advance Decision in place – with research showing that 22% don’t know what one is.

Although more than one in 10 (12%) think Advanced Decisions are not something they need to consider because they are currently healthy, or because they don’t expect anything to happen to them anytime soon (11%), almost half of Brits (48%) agree that an advance decision to refuse treatment would be a way to ensure their wishes are respected, with 23% believing it would help avoid their family having to make difficult decisions.
The benefits of completing an Advance Decision are clear, so why is it that so few of us have done so?
We asked Usha Grieve Director of Partnerships and information from Compassion and Dying.

Patient Talk) So Ousha, what is an advanced decision?

Usha Grieve) An advanced decision allows you to say now if there are medical treatments you don’t want to have in certain situations in the future, in case you later lose the ability to make that decision for yourself. I think a lot of people are surprised when they find out that their family members can’t make decisions for them in that situation, but an advanced decision allows you to speak for yourself when you actually can’t.

Patient Talk) And does it have any force in law, if not should we use a solicitor?

Usha Grieve) It does have force in law, so advanced decisions are legally binding in England and Wales. That means that as long as they are completed correctly, so they’re signed and witnessed amongst other things, then they can’t be overruled by a Doctor or by family members, but there is actually no need to use a solicitor to do it. I think that this is a common misconception and often puts people off because they think the process might be complicated or expensive, but it’s free and there’s free support available from Compassion and Dying to complete the forms as well.

Patient Talk) And what happens if I change my mind? What are the roles and responsibilities of family members?

Usha Grieve) Well you can change your mind at any time and either change the content of the decisions you’ve made within the form or you can revoke it all together. It is a very personal decision after all.

Patient Talk) And what does the medical profession in the UK and America think?

Usha Grieve) The medical profession in the UK are hugely supportive of advanced decisions. It makes a very difficult situation much easier for health care professionals because it means that they are not left having to make a decision for someone who lacks capacity without knowing what that person wants and what’s important to them.

Patient Talk) And what do you say to the argument that this is a halfway house to assisted suicide?

Usha Grieve) An advanced decision just lets you refuse medical treatment in advance. Everybody who has capacity in the UK has the right to do that anyway, so it’s not about ending your life early, its merely about saying there are treatments that you wouldn’t want if you had a quality of life that you found unacceptable.

Dr Sharmila Parks “Advanced decisions are still relatively uncommon. Two examples I can think of are for patients who are still alive. One is for a lady who has cancer. She is elderly and has decided not to have active treatment. She was concerned about seeing a specialist as felt she would be “forced” into treatment. Since making an advanced decision she has felt confident to seek help from specialist services for support knowing that her wishes will be respected if she is unable to communicate them herself. The second was is a gentleman whose relative had had a severe head injury, end up on a ventilator on ITU and sadly died. This gentleman decided that under no circumstances that he would want the same for himself. After discussions about various scenarios he felt he wanted to make an advanced decision to ensure his wishes were known.

Anyone with a condition which would prevent a person either being able to make a decision about their care themselves (had lost capacity) or were unable to communicate their wishes would benefit from making an advanced decision. While conditions such as dementia and neurological illness like motor neurones disease come to mind, sadly anyone could be in this situation due to unforeseen accidents or acute illness.”

For more information please go to makeityourdecision.org.uk.