Older people’s right to end of life care
When a parent is facing a terminal illness, it can be difficult to have a conversation about how they would like their end of life care to be managed; however, without putting some practicalities in place, their wishes may not be respected, and you may have little control over how their treatment proceeds if they lose mental capacity or the ability to communicate.
More than half of us incorrectly believe that we have the right to make a decision on behalf of a loved one who is seriously ill, but the reality is that if our parent or relative has not made an Advanced Decision or instructed you to be their Lasting Power of Attorney, the direction of their medical care can be decided by their doctor.
Although a difficult conversation, there are some steps that can be taken which allow your parent or relative to have control over their treatment and state how they would like to be treated towards the end of their life.
The first step is for your relative to make an Advanced Decision; this is a legally binding document which, if applicable, means that healthcare professionals must follow your relative’s wishes for treatment at the end of their life, even if they are unable to communicate with them directly. You do not need a solicitor to fill out these forms, in fact, charities such as Compassion in Dying provides the forms for free, and they will allow your relative to refuse any treatment – including life-sustaining treatment – which they do not wish to have, for example resuscitation and artificial nutrition.
The second option is for them to make yourself or another trusted individual their Lasting Power of Attorney, which will allow the selected person to make decisions about the person’s end of life care on their behalf, should they lose capacity. A Lasting Power of Attorney for Health and Personal Welfare gives you the authority to make decisions on your loved one’s behalf. This can include decisions about life-sustaining treatment if they have given you that power. As your loved one’s Attorney, you will only start making decisions on their behalf if they lose mental capacity or the ability to communicate. You must always make decisions in the best interest of the person who has appointed you, based on what they have told you about how they would like to be treated.
Options for end of life care can often feel like a minefield, made worse by the fact that some healthcare professionals themselves are not fully aware of their patients legal rights, however charities can provide impartial advice on what your relatives’ rights are, to make sure that as many people as possible are able to have their final days play out in the way of their choosing what they consider to be a good death.
If you are in the position where your relative is receiving end of life care and does not have either an Advanced Decision or a Lasting Power of Attorney, then you still have some options. If your loved one is able to communicate and make decisions for themselves, then they are able to refuse medical treatment, including life-sustaining treatment. They do not have the legal right to ask for a specific treatment, but the doctor should discuss their options with them fully, giving them time to come to a decision and take their choices into account when deciding how to treat them. In the event that your loved one has lost mental capacity or the ability to communicate, their doctor will make the final decision about how they are treated. If this is the case, the doctor should take your views into account, but ultimately has the final decision, and if you are concerned about the treatment they are receiving you can apply to become a Court Appointed Deputy for your loved one.
Compassion in Dying is the only UK charity set up to help people navigate their legal rights for their end of life. Here, Chief Executive Sarah Wootton shares her views on what the current options for end of life care are, and how you can help guide a parent or relative through making their own decisions about what they would and would not want at the end of life, and ensuring those decisions are respected. For further information on end of life care rights then please visit the Compassion in Dying website, or call the free helpline on 0800 999 2434
