Responding to the results of the latest Adult Inpatient Survey by the Care Quality Commission, Usha Grieve, Director of Partnerships & Information at Compassion in Dying, said:

“The finding that 44% of patients did not feel involved in decisions about their treatment is troubling. Forty-five per cent of patients also said they did not feel involved in discharge decisions, and 35% said they weren’t given enough information when leaving hospital. These results are disappointing and are a clear indication that much more still needs to be done to achieve truly patient-centred, personalised care.

“Yet these results are sadly not surprising. We repeatedly hear from the people we support that they are not given the information they need in order to make the decisions that are right for them at the end of life. Empowering patients to take an active role in healthcare decisions, and supporting healthcare professionals to be able to have frank and open conversations, is crucial in order to achieve this. Patients repeatedly express a desire for more choice and control; indeed the 2017 Ipsos Global Trends Survey found that 67% of Britons would like more control over health decisions.

“One way to help address this issue is to encourage patients to discuss their wishes for future treatment. Patients then need to be supported to record these wishes in a legally binding way, such as by making an Advance Decision and/or Advance Statement. This allows people to state what treatment they may want to refuse in certain situations and to express other preferences such as where they’d like to be cared for. Making wishes clearly known in this way enables patients to feel in control and reassured that they’ll get the treatment that’s right for them in future, even if they later become unable to communicate these wishes themselves. Both forms are available for free from Compassion in Dying, and further information and support can be accessed online or by phone (0800 999 2434) – for patients and healthcare professionals alike.”

***ENDS***

Notes to Editor

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. We are a leading provider of free Advance Decisions in the UK and we also conduct and review research around patient rights and choices in end-of-life care.

Compassion in Dying is a charity that provides free support for people to plan ahead for a time that they may lack capacity to make decisions about their treatment including a Freephone information line 0800 999 2434.

Compassion in Dying developed www.mydecisions.org.uk which is a website the public can use for free to make a legally binding Advance Decision or an Advance Statement.

  • 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 lack capacity and cannot make or communicate a decision for yourself. The legal name is an Advance Decision to Refuse Treatment, and it was previously known as a Living Will. Advance Decisions are legally binding in England and Wales, as long as they meet certain requirements.
  • An Advance Statement allows you to record your wishes, feelings, beliefs and values in case you later become unwell and need care or medical treatment. It provides a space for you to write down anything that is important to you in relation to your health and wellbeing. For example, you can use it to express your preferences for care or to detail any values or beliefs that inform the decisions you make. It gives those around you (your family, carers, and healthcare team) a clear idea of what you want if you are unable to communicate this yourself. An Advance Statement helps to make sure that, if you lose capacity (the ability to make and communicate a decision), your wishes are known and can be followed. It supports people involved in your care to understand your wishes if you cannot make decisions for yourself.