Research shows improvement is needed in people’s experiences of end of life care in Cornwall

The county’s health and social care watchdog report, My Life My Death – A report on public understanding and experience of end of life care in Cornwall has been published today. It is based on findings from nearly 700 responses to a survey of the public’s experiences and preferences for end of life care in the county.   It also includes what health and social care professionals attending a conference run by Healthwatch Cornwall in May this year, identified as priorities to address to ensure better care at end of life for our county’s residents.

Healthwatch Cornwall created the survey in collaboration with Cornwall’s End of Life Strategy Board, and has now made several recommendations to them in a bid to improve provision across the county.  

Healthwatch Cornwall’s Chief Executive Amanda Stratford explained why Healthwatch Cornwall has focussed on end of life care: “We wanted to understand progress against previous work in this area in 2016 and deliver something that would help improve services. We have renewed our focus for EOL care work in Cornwall to ensure its priority across the wider health and social care system. In May we organised a conference “My Life My Death” to provide an educational update and learning for a wide range of professionals – we also wanted to inspire them to consider about how their systems effect the individual.”     

“We would like everyone to receive high quality care, delivered compassionately and with dignity, by the right person, with the right skills at the right time. By doing so, we hope this will ensure people at the end of their lives and those close to them, will experience a calm, peaceful and dignified death where possible. “

The report highlights the need to de-medicalise death and dying within our community and for people to talk about their wishes and to document them. To support this Healthwatch Cornwall has partnered with Cornwall Hospice Care to produce an Advance Decision Card. This can be carried by individuals to let people know they have documented their wishes in an Advance Decision form (also known as a ‘living will’).

Patients and family members’ understanding of a terminal diagnosis was low (31%), despite two thirds feeling they had the opportunity to ask questions, highlighting a need for professionals to improve communication and check people’s understanding.

Only one in two bereaved were happy about the quality of care their loved one received at end of life.  Carers and supporters of those with a terminal illness were regularly providing emotional support and care. Despite this, one in two ‘carers and supporters’ were not getting the support they needed.

Dr Tamsyn Anderson, Chair of Cornwall and Isles of Scilly’s End of Life Strategy Board said:

“As a board we have identified three key priorities: To raise public awareness and EOL education and training, To improve EOL care planning in advance and to ensure people and professionals can access the right care and support at all times of day and night.”

“I want our system to be responsive and caring to the dying person and their family so they do not feel alone or frightened and feel cared for and supported”

“Our aim is for Cornwall and the Isles of Scilly is to become a compassionate county that provides support to someone who is dying…this means a culture shift to normalise death, dying and bereavement and requires change from individuals, communities, services, organisations and systems”

Recommendations in Healthwatch Cornwall’s report include:

• A plan to educate the public and encourage people to make informed choices to ensure we can deliver personalised EOL care.
• Training for professionals ensuring all communication is effective and appropriate (right place, right time, right way) and checking people’s understanding is crucial to this.
• Providers should ensure specialist skills and services are promoted and are accessible by clinicians and the public to enable specialised EOL care to be delivered when and where it is needed (in-reach, outreach, Neighbourhood Hubs etc).
• The system should make a concerted effort to drive cultural shift by engaging individuals, communities, organisations in de-medicalising death, normalising dying and bereavement.
• Enable EOL care to take place in an individuals’ preferred place of dying.

Visit healthwatchcornwall.co.uk/our-work/our-reports/ to read the report and supporting data in full.