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21st May 2016

Consistency in terminal care?

A research study has been published by the Primary palliative care research group in Scotland, jointly carried out between Lothian NHS, the University of Edinburgh, and the Marie Curie charity. It found the need for more consistency in care and treatment at an earlier stage in terminal illness. Improvement in service has occurred, and the Scottish Government is funding further improvement under its strategy, but the study found a wide variation across nine practices in the area. A concerning picture emerged of systematic inconsistency in the provision of planning for terminal care.

End of life choice

The leader of the research group stated that people with dementia and people with cancer were more likely to receive planned end of life care. The team studied records from more than 600 deceased Lothian patients, measuring how many patients had a vital electronic record, known as a Key Information Summary (KIS), where GPs can record people’s preferences to share them with hospital staff or ambulance workers. These records are likely to enable a person's own decisions about terminal care to be made known and to be adhered to. It is more likely that these patients will die outside of hospital, which the study saw as a marker of quality of care.

Cause of the inconsistency?

60% of people who died with dementia and 75% of people with cancer were found to have the record made for them. Only 40% of people who died with organ failure were found to have the advanced care record drawn up. This means that a higher number of people with organ failure are more likely not to receive their choice of quality care at the end of their life.

The cause of the inconsistency is not clear. There was discussion about the discomfort some feel at discussing end of life care with the person, and possible 'branding' of palliative care. Other studies have shown that 11 000 people in Scotland who require palliative care each year are not getting access to it. This study found wide variation across medical practices: 92% in one case had the appropriate planning, and only 36% in another.

Planning and funding for continued improvement

However, the Scottish Government is pursuing greater quality of care in this field. £3.5 million has been pledged to ensure that by 2021, every person can have the end of life choices which they want.

The Strategic Framework for Action on Palliative and End of Life Care is Scotland’s response to a resolution passed in 2014 by the World Health Assembly – the governing body of the World Health Organisation, - requiring all governments to recognise palliative care and to make provision for it in their national health policies. An executive summary includes the aims that -

  • People receive health and social care that supports their wellbeing, irrespective of their diagnosis, age, socio-economic background, care setting or proximity to death.
  • People have opportunities to discuss and plan for future possible decline in health, preferably before a crisis occurs, and are supported to retain independence for as long as possible.
  • An enhanced contribution of a wider range of health and care staff in providing palliative care.
  • A sense among staff of feeling adequately trained and supported to provide the palliative and end of life care that is needed, including a better understanding of how people’s health literacy needs can be addressed.
  • A greater openness about death, dying and bereavement in Scotland.

This study found there had been improvements, although calling for greater consistency. We hope that the clear plans in the Government strategy will close the gaps in provision to ensure that appropriate care is available for all.

*All information is correct at the time of publishing. Use of this material is subject to your acceptance of our terms and conditions.

Tony Clarke

Scottish Care Inspectorate Specialist

Tony began care work as a care assistant in care of the elderly here in Scotland in the 1970s. He very much enjoyed promoting activities, interests and good basic care. After a gap to gain a social work qualification, he worked in management of care services, latterly as a peripatetic manager which gave him experience of a wide range of services.

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