First free website of its kind in the UK, designed with patients

Only 4% of the population have an Advance Decision (‘Living Will’) despite such plans making it 41% more likely people will ‘die well’

 

Compassion in Dying will today launch an innovative free website in response to growing concerns about the low numbers of individuals planning ahead for their treatment at the end of life should they lose capacity, for example as a result of dementia or becoming unable to communicate their wishes.

The MyDecisions website (www.mydecisions.org.uk) allows a person to draft an Advance Decision or Advance Statement online for free. Designed in collaboration with patients, clinicians and lawyers, the website takes users through different scenarios they may experience if they lose capacity to make decisions, whether due to illness or an accident. People then get a personalised Advance Decision or Advance Statement to print, sign, witness and share, something which could make a significant difference to getting the care that is right for them.

Findings published by Compassion in Dying in 2014 revealed that whilst 82% of people have strong feelings about what treatment they would or would not want at the end of life only 4% of them have made either an Advance Decision (AD) or Lasting Power of Attorney (LPA). Further findings published in September 2015 found that where wishes of patients were recorded they were 41% more likely to be judged by loved ones to have died well. Where such wishes were not recorded, loved ones were 53% more likely to feel that the patient received treatment they would not have wanted.

Recent court cases have demonstrated the importance of planning ahead for the end of life, with the courts placing increasing emphasis on respecting patients’ autonomy. In November 2015 the Court of Protection established that the previously expressed wishes of a patient (Mrs N) took precedence over healthcare professionals’ views, even though the patient had not formally recorded her wishes. This was a significant departure from the precedent established in M’s case in 2011 where significant weight was placed on the sanctity of life as opposed to the patient’s preferences.

Sarah Wootton, Chief Executive of Compassion in Dying, said:

“At this time of year many people make resolutions for their future – whether diet, smoking or work – but there are few decisions as important as planning to die well.”

“Compassion in Dying already supports thousands of people every year to complete Advance Decisions but there are still far too few people planning for the end of their lives, despite them having strong feelings about how they want to be treated. In the last year there have been a number of cases in the courts that have shown how important it is for people to plan ahead and make their wishes for the end of their lives known.”

“It is not something many of us want to think about or discuss, let alone have the time to organise, that’s why MyDecisions.org.uk has been designed with patients for patients, to make it as straightforward as possible.”

“It is free and takes you through different scenarios you may experience if you are ill and lose capacity to make decisions, whether from an illness or an accident. At the end you get an Advance Decision or Advance Statement to print out, get witnessed and keep, something which could make a huge difference both to you and your loved ones.”

***ENDS***

Notes for the editor:
For all Compassion in Dying media enquiries, please contact Sam Dick on 020 7479 7739, 07725 433025 or sam.dick@compassionindying.org.uk.

  • Compassion in Dying is a national charity (no. 1120203) that aims to support people at the end of life to have what they consider to be a good death by providing information and support around their legal rights and choices. Compassion in Dying is the sister organisation of Dignity in Dying and was set up to help people exercise their rights and choices under the current law. The charity does not campaign for a change in the law on assisted dying
  • MyDecisions.org.uk is the UK’s first free online tool for people to complete and print an Advance Decision or Advance Statement. It has been developed in consultation with over 300 of Compassion in Dying’s service users.
  • Compassion in Dying already supports thousands of people to complete Advance Decisions each year, providing 6287 forms and talking to nearly 4,000 people through its Information Line service in 2015 alone.
  • The 4% and 82% figures are from YouGov Plc. Total sample size was 1,972 adults. Fieldwork was undertaken between 28th– 29th October 2014. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).
  • The 41% and 53% figures are from analysis of polling by YouGov Plc. Total sample size was 3,304 adults of which 2,671 chose to answer these questions; 1,937 had a close friend/relative who passed away after a long/short illness. Fieldwork was undertaken between 29th April – 1st May 2015. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).
  • An Advance Decision allows you to record any medical treatments that you do not want to be given in the future, in case you later become unable to make or communicate decisions for yourself. It will only be used if you cannot make or communicate a decision for yourself. The legal name is an Advance Decision to Refuse Treatment, and it is also sometimes called a Living Will or an Advance Directive. It is legally binding, as long as it meets certain requirements. This means that if a healthcare professional knowingly ignores one that meets these requirements they could be taken to court. An Advance Statement allows you to record anything that is important to you in relation to your future care and wellbeing. For example, any religious or spiritual beliefs you have, where you would like to be cared for and other things important to your quality of life. Advance Statements are not legally binding but have to be taken into consideration when a decision is being made on your behalf.