In response to the End of life care strategy published by the Department of Health in July 2008 and it’s commitment to carry out surveys of bereaved relatives, the Office of National Statistics published the findings of the first national bereavement survey on 03/05/2012 on behalf of the Department of Health. It’s overall aim was to survey the quality of care delivered to people in the last three months of life in this country and to assess variations in the quality of care delivered.
The approach was based on extensive research by Professor Addington-Hall and colleagues, asking bereaved relatives about their perceptions of the care given to recently deceased persons in the three months leading prior to death. Initially commenced as a pilot in two PCT’s, the questionnaire was extended to 51 PCT clusters across England. The Views of informal carers for the evaluation of services (VOICES) approach has been successfully used to assess the quality of care given to patients dying from a range of conditions and in different locations.
As shown on page 47 of the DH key findings report, the 51 PCT’s have been given benchmark ratings for PCT clusters across 11 key questions:
1. Overall quality of care across all services by PCT clusters
2. Co-ordination of care while patient was at home
3. Co-ordination of care: hospital with GP/community services
4. Dignity and respect shown by Doctors all of the time in last two days
5. Dignity and respect shown by nurses all of the time in last two days
6. Pain management in the last two days
7. Patient involved in decisions re: care as much as wanted
8. Patient expressed preference where would like to die
9. Respondent considered patient died in the right place
10. Support for carers while patient at home
11. Support for carers to discuss worries with GP
The key findings of the report have shown disparity between the quality of care in the last three months of life delivered in the community, hospices and hospitals with hospitals coming out poorly in comparison to their counterparts.
87% of those surveyed felt there was dignity and respect shown at all times by Hospice Drs (57% in hospitals) and 80% from hospice nurses (48% in hospitals). Those surveyed who expressed a preference, the majority (71%) preferred to die at home although the most commonly (53%) recorded place of death was a hospital.
Nationally, the overall quality of care across all services in the last three months of life was rated by respondents:
• 12% as outstanding
• 30% as excellent
• 33% as good
• 14% as fair
• 10% as poor
It would seem that the findings of the full report show that those who have had a cause of death linked with cancer or dementia have had better experiences than those dying under other circumstances.
My opinion as a reader of this report is that this is linked with the level of communication between professional teams, the patient, relatives and carers leading up to death. Those in differing circumstances do not seem to receive the same level of interaction with the teams and it would seem that this is the missing link to providing better end of life care in hospitals. Lessons on how to communicate the current and pending situation with families must be learned from hospices and care homes where good communication is the norm.
The full survey can be found via the following link.
Sam Goss FAAPT,
AAPT Bereavement Lead,
Salisbury Bereavement Services