Knowing your rights: Advanced Decisions and LPA

Compassion in Dying is the only UK charity set up to help people understand their legal rights for their end of life care. Here, Chief Executive Sarah Wootton shares her thoughts on how you can take the necessary steps to make your wishes for treatment and care legally binding in case you lose the ability to make those decisions when the time comes. 

Check The Facts

It is a worrying statistic that almost half of us wrongly believe that family members have the right to make healthcare decisions on behalf of a loved one if they are seriously ill and have lost the ability to communicate. The reality is that if an Advance Decision has not been made or if a Lasting Power of Attorney has not been appointed, then your doctor will decide what treatment to give you. They will base their decision  on what they believe is in your best interests but this may not be what you would have wanted.

Whether you are considering your own end-of-life wishes, or are assisting a relative with theirs, it is crucial that tools such as an Advance Decision or a Lasting Power of Attorney for Health and Welfare are in place to ensure that these wishes are respected. Sometimes doing so can seem daunting, but our aim is to inform people of the  simple steps that can be taken to set out their wishes for treatment and care in a legally binding way, and support them through the process.

Advance Decision

One option to ensure a person’s end of life wishes are respected is to make an Advance Decision. An Advance Decision is a document that allows someone to make a legally binding refusal of medical treatment in advance of a time when they can’t make or communicate a decision.. Compassion in Dying can provide the forms for free, with comprehensive guidance notes, and there is no need to involve a solicitor. It enables a person to say what treatments they would like to refuse at the end-of-life - including life-sustaining treatments such as resuscitation or artificial hydration and nutrition. 

Compassion in Dying’s form also gives space for people to outline their wishes, values and the treatments they would find acceptable.  It’s really important to include this information as it builds a clear picture of what is important to you, which is crucial to help your healthcare team understand what you want.  However, it is not enforceable in the same way the refusal of treatment is. If someone loses the ability to communicate or the capacity to make a decision then Advance Decisions are a direct communication between that person and the professionals treating them. It allows them to speak for themselves and means that other people will not have the responsibility of making life and death decisions on their behalf.

Lasting Power Of Attorney

Another option is to make a Lasting Power of Attorney for Health and Welfare. This will give one or more trusted people the legal power to make decisions about a person’s health and care  on their behalf, should they lose the the capacity to make their own decisions. The role of the Attorney(s) is to make decisions in the best interests of the person who has appointed them, based on what they know about that person’s values, beliefs and wishes. Attorneys could have the power to make decisions about anything to do with the person’s health and care, including decisions about life-sustaining treatment. It is therefore very important that any Attorney understands the person’s wishes and feels comfortable and confident making potentially life-changing decisions on their behalf.

Know Your Rights

If neither an Advance Decision or Lasting Power of Attorney – or a combination of both - has been put in place then, providing you can communicate and have capacity, you should be involved in all decisions about your care, and have the right to refuse any medical treatment, including life-sustaining treatment, at any time.

A doctor should always discuss any treatment options with their patients in clear language, explain the pros and cons of each treatment and give them time to come to a decision. In the event that the patient loses mental capability, or the power to communicate, and has not made an Advance Decision or a Lasting Power of Attorney then the doctor would make decisions on their behalf.  In this situation the doctor should always take their patient’s views into account and treat accordingly where possible.
For further information on end of life rights please visit the Compassion in Dying website or call the free helpline on 0800 999 2434 to receive impartial information on the options available to you or your loved ones on end of life care planning.