Listening to dying people in Wales

by Simon Jones
Head of Policy and Public Affairs, Wales


Over 30,000 people in Wales die each year. In 2012, nearly a third of the people who died had cancer. Many more will have died from other terminal illnesses such as chronic obstructive pulmonary disease or heart disease.

Each individual will have personal wishes about where they wish to be cared for and where they wish to die.  They will also have many non-healthcare needs which impact on their wellbeing just as much as their healthcare does.  This could be as seemingly mundane as who looks after the family pet or as overwhelming as who will provide for a family.

If we are to do the best for dying people in Wales we must find out about people’s experiences of the care they received at the end of their lives. Only then will those that plan and deliver services be able to make informed decisions based upon people’s needs.

In a new report, Listening to Dying People in Wales, Marie Curie Cancer Care looks at the methods currently in place for gathering experience feedback from terminally ill people and their families and carers. It finds that there are a number of limitations. For example, low response rates and the range of data collected from the current survey approach – the iWantGreatCare survey – mean that it cannot provide a properly representative picture of how people feel about the care they receive. The views of people who die from a terminal illness but have not received specialist palliative care are also missed from this.

One way of increasing our understanding of how people have felt about their experiences of end of life care would be to introduce a national survey of the bereaved. Since 2011 there have been two national bereavement surveys in England.  They are known as the VOICES (Views of Informal Carers – Evaluation of Services) surveys. These surveys have provided very valuable information about people’s preferences. They also provided information about people’s experience of care in different setting, how well co-ordinated it was, whether there had been an opportunity to talk about where the person wished to die as well as collecting information in people’s personal circumstances such as age, gender and ethnic origin.

Marie Curie in Wales is calling for the introduction of a VOICES type survey in Wales so that we can begin to develop a strong evidence base upon which services can be developed and improved. However, no single method can provide all the rich information required to plan high quality services which have people’s needs and wishes at the core. For this reason we are calling for the following set of actions in Wales:

  • An annual bereavement survey to be introduced

  • Significant improvements to real-time feedback measures undertaken

  • In the future, a ‘snapshot’ survey of people on a palliative care register to be carried out

  • There should be clearer guidance on the use of patients’ concerns data by Health Boards