Two-thirds of Scots with a serious illness now have a care plan in place

Section: Policy into PracticeType: News Item Date Published: 17th December 2019
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Marie Curie urges ask your GP for a Key Information Summary (KIS).

Terminal illness charity Marie Curie is urging every Scot who is living with a progressive illness to talk to their GP about completing an electronic care record, known as a Key Information Summary (KIS).

The KIS is an electronic care co-ordination record introduced by the Scottish Government which can be shared with any health professional involved in the person’s care including NHS24, the ambulance service and hospitals.

The KIS is vital to communicate people’s treatment wishes as it records how and where they want to be cared for and die. With a KIS, new research by the University of Edinburgh and Marie Curie published online at the British Journal of General Practice, reveals people are twice as likely to die at home which may be because people’s wishes and preferences can be recorded and it is much easier to coordinate their care. The research was funded by Healthcare Improvement Scotland’s Living Well Palliative Care Programme.

The study also reveals that while two thirds (69 percent) of Scots have a KIS at the time of death, on average created ten months before death, a third didn’t have a KIS. This is good progress towards the Scottish Government’s aim that by 2021 all who would benefit from a KIS will receive one. However, Marie Curie believes not enough progress has been made quickly enough. By asking for a KIS, people can help prioritise their care from diagnosis of a serious illness and ensure their own wishes can be met. The benefit being not just for the patient, but helping reduce use of hospital services as less people will be cared for in hospital unnecessarily.

The results of the study also suggest the type of condition can affect whether you have a KIS. People with cancer had a KIS created in the last three months of life, much later than for those with other conditions. Those who had cancer, frailty or dementia were most likely to have a KIS, whereas those with conditions such as heart failure, liver disease and COPD are least likely. Only 47 percent of those with organ failure had a KIS compared to 80 percent with cancer.

Less than half of the KIS’s examined contained contact details for the patient’s next of kin or carer. This is concerning in identifying people who have a caring role and ensuring people are kept updated in an emergency situation.

Marie Curie has recently launched the biggest ever campaign to encourage people to talk about and plan for the end of life. Reluctance to think or talk about dying and death means many of us feel deeply unprepared and distressed when facing the end of life, either for ourselves or our loved ones.

Dr Anne Finucane, lead author of the paper and Marie Curie Hospice, Edinburgh Research Lead said: “Everyone living with a terminal illness should have a KIS and if a GP isn’t bringing it up, people should ask for themselves. GPs recognise the usefulness of the KIS in supporting care of their patients out-of-hours, so are generally very happy to discuss this when it is raised, and help people think through their preferences.

“In Scotland we’re leading the way in terms of the proportion of people who have a shared electronic care record describing their needs and preferences towards the end of life, but there’s more that can be done to ensure that everyone who needs one gets one, and that it’s as detailed as possible. Everyone benefits from a good KIS.”

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