We need to design better end of life experiences

Yesterday’s Dying without Dignity report from the Parliamentary and Health Service Ombudsman highlights the serious need for end of life care services in the NHS to be improved. The report features 12 cases that act as examples for issues regularly noted in other casework.

It takes into account the experience of patients up and down the country and argues that thousands of patients are suffering needlessly due to poor provision of services.

Key issues identified by the research include:

• Not recognising that people are dying, and not responding to their needs
• Poor symptom control
• Poor communication
• Inadequate out-of-hours services
• Poor care planning
• Delays in diagnosis and referrals for treatment

Design Council has been exploring social issues relating to an ageing population's health and care for a number of years. We’ve gained significant insight into this area through our open innovation design projects such as Living Well with Dementia and Independence Matters and in recent months we’ve started to think more about end of life care.

Our research has shown that avoiding the design of end of life care – the intentional shaping of desired options – leaves people making poor, often overly-medicalised choices. So often bereaved families are left with the sense that they and their loved one did not have the experience that they had hoped for in the last months, weeks and days.

We need to overcome our reticence to explore these issues and design better end of life experiences. The Dying without Dignity report’s distressing cases have many causes but what is clear is that individuals and their families must have more choice and control in end of life care.

Design Council is exploring ways to address this challenge through our recently launched Design for Care programme.

The aim of the programme is to create a system that is more personalised, more connected and more preventative.

We are currently looking for funders to partner with us on this important field of work.