End of Life Care - know your rights

Knowing your Rights: End of Life Care

Most of us will have given some thought to our end of life care, and what we would accept and refuse in terms of treatment. However, shockingly only 4 per cent of UK adults have taken the necessary steps to legally record these wishes, namely making an Advance Decision or appointing a Lasting power of Attorney, meaning that for many of us, how we are treated and cared for in our final days could be out of our hands, and out of the hands of our loved ones. Worryingly, 48 percent of people wrongly believe that their family members have the legal right to make decisions on their behalf, should they lose the ability to communicate.

An Advance Decision is a legally binding document which, if applicable means that healthcare professionals must follow your wishes for treatment at the end of life, even if you are unable to communicate with them directly.  Making a Lasting Power of Attorney allows a person to appoint someone to make decisions about their end of life care on their behalf, should they lose capacity. 

Compassion in Dying is the only UK charity set up to help people navigate their legal rights for end of life care. Here, Chief Executive Sarah Wootton shares her views on what the current options for end-of-life care are and how you can legally ensure that your final wishes are respected.

“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 patient’s legal rights. Unfortunately, Advance Decisions are often not recommended, or are overlooked if a patient does have one, and this can lead to confusion amongst both the public and health care professionals over how people should be treated during their final stages of life.

“From the research that we have carried out we know that 82 per cent of people have strong views on their end of life care, yet only a tiny portion of these people (4 per cent) then take the necessary steps to ensure that their wishes are carried out. Our main role at Compassion in Dying is to provide information and support for anyone who is uncertain of their options, making 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 feel strongly about the care and treatment that you would want to receive, particularly if you are facing the end of your life, or are given a life-changing diagnosis or undergoing surgery, then it is important to plan ahead by setting out your wishes in an Advance Decision, and by appointing an Lasting Power of Attorney if there is someone you can trust to voice your wishes if you are unable to do so.

“Whilst it is crucial that people plan ahead using these tools, the system is by no means perfect.  There needs to be a formal system for recording Advanced Decisions to ensure that once someone has made an Advance Decisions it can be located and acted upon if needed.  At present the onus is on the individual to make healthcare professionals aware of their Advance Decision.  However, it is still best to take the legal steps of appointing either a Lasting Power of Attorney or making an Advanced Decision, to give you the best chance to receiving the death you would choose.”

For further information on any of your end of life care rights then please visit the Compassion in Dying website - http://www.compassionindying.org.uk/ or call the free helpline on 0800 999 2434 to receive impartial information on the options available to you on end of life care planning.

Content credited to: Compassion in Dying charity - March 2014