The National Bereavement Survey (VOICES – Views of Informal Carers – Evaluation of Services) was commissioned by the Department of Health (DH) and administered by the Office for National Statistics (ONS). The End of Life Care Strategy published by DH in July 2008 set out a commitment to promote high quality care for all adults at the end of life and stated that outcomes of end of life care would be monitored through surveys of bereaved relatives.
The main report for this first national survey “Quality of care at the end of life: First national survey of bereaved relatives in England” is published on the DH website. It presents findings according to the following themes aligned with the End of Life Care Strategy: quality of care; coordination of care; relief of pain and suffering; care and support for the patient; decision making, communication, preferences and choice; and support for relatives, friends and carers.
Detailed tables and a full description of the methodology can be found in a companion statistical bulletin “National Bereavement Survey (VOICES), 2011” on the ONS website. Both reports focus on findings for England at national level although web appendix A of the DH report also contains 11 benchmarking charts showing variations by PCT Cluster which are referred to in this report.
This survey used the VOICES questionnaire short form (VOICES–SF) with 59 questions, amended slightly according to recommendations arising from the pilot survey (Hunt et al, 2011). The questionnaire, which was sent to the person who registered the death, was produced with the pronoun specific to the deceased (see Background Notes 1 and 2). A sample questionnaire, with the male pronoun, can be found in web appendix B of the DH report.
Results (tables and charts) are presented with confidence intervals, to aid interpretation. Confidence intervals are useful in indicating the amount of uncertainty there is around a figure and for allowing comparison of groups or areas (see Background Note 3).
Benchmarking charts are colour–banded: the red section shows the spread of scores for the lowest scoring 20 per cent of PCT Clusters, the green section shows the spread of scores for the highest scoring 20 per cent of PCT Clusters and the amber section shows the spread of scores for the remaining 60 per cent of PCT Clusters.
All results tables and benchmarking charts by PCT Clusters for the 2011 VOICES survey can be downloaded from the ONS website. All tables and charts are presented with the PCT Clusters grouped under Strategic Health Authority (SHA) regions.
The sample of approximately one in six adults who died in England between November 2010 and June 2011 was stratified to be representative of most deaths in England. Certain causes of death were excluded from the sample, such as suicides; the “National Bereavement Survey (VOICES), 2011” bulletin and metadata in the tables report the full sample details (and see Background Note 4).
PCT Cluster sample sizes varied from 342 in Inner North East London to 2,422 in Greater Manchester. Response rates varied from 26.6 per cent in Inner North East London to 53.5 per cent in Swindon and Gloucestershire PCT Cluster.
The age distribution of the PCT Cluster samples varied with Inner North East London having the youngest sample population (41.1 per cent who were aged 80 years or more) and Bournemouth and Poole and Dorset PCT Cluster having the oldest (66.2 per cent aged 80 years or more).
There were no significant differences between PCT Clusters across the three broad cause of death groups, with 30 per cent of deaths being from cardiovascular disease, 30 per cent cancer and 40 per cent ‘Other’.
The country of birth of the deceased is recorded on the death certificate. The percentage of non–UK born people in the sample varied across PCT Clusters, from 0.8 per cent in Durham and Darlington to 45.3 per cent in Inner North East London.
A measure of area deprivation, the Index of Multiple Deprivation (2010) for England was used to investigate how deprivation varied across PCT Clusters, using the postcode of the deceased’s usual residence to assign people to a quintile of deprivation at lower super output level (LSOA) (Communities and Local Government, 2011).
The level of deprivation also varied across PCT Clusters from just 0.2 per cent of people in Surrey being in the most deprived quintile, to 84.2 per cent in Inner North East London. (See Table ‘Responses’ in ‘Quality of Care’ tables).
Quality of Care was assessed across different care settings. Six settings are reported by PCT Cluster: Out of Hours, District and Community Nurses, GPs, Care Home, Hospital Doctors and Hospital Nurses (See ‘Quality of Care’ tables). Quality of Care ratings in the Hospice setting are not presented at PCT Cluster level due to low numbers. The Quality of Care rating over all services and settings was published previously in web appendix A.
Across all six care settings, no PCT Cluster was rated green although North of Tyne was rated in the top 20 per cent in five settings. The ratings for one PCT Cluster (Inner North East London) are not reported due to low numbers.
Of the remaining 50 PCT Clusters, 23 did not receive any green ratings for Quality of Care. The top ten PCT Clusters can be seen in Figure 1: Count of green benchmark ratings (highest scoring 20 per cent) for Quality of Care by PCT Clusters across six settings’.
Another aspect of care was whether staff treated the patient with dignity and respect. This was assessed across different care settings. Five settings are reported by PCT Cluster: District and Community Nurses, GPs, Care Home, Hospital Doctors and Hospital Nurses (See ‘Dignity’ tables).
Ratings in the Hospice setting are not presented at PCT Cluster level due to low numbers. Dignity and Respect shown by doctors and by nurses in the last two days, irrespective of setting, were published previously in web appendix A.
Across all five care settings, Cornwall and the Isles of Scilly PCT Cluster was consistently rated in the top 20 per cent. The ratings for one PCT Cluster (Inner North East London) are not reported due to low numbers. Of the remaining 50 PCT Clusters, 26 did not receive any green ratings for Dignity and Respect shown. The top eight PCT Clusters can be seen in Figure 2: Count of green benchmark ratings (highest scoring 20 per cent) for Dignity & Respect by PCT Clusters across five setting
A range of questions were asked about patient care and support. Two of the nine questions reported by PCT Clusters cover the last three months of life: relief of pain when the patient was at home, and when the patient was in hospital.
The other seven questions focus on care in the last two days: whether personal care needs and nursing care needs were met, whether adequate privacy was provided, relief of symptoms other than pain, spiritual support, emotional support and support to stay where the patient wanted to.
Ratings regarding pain relief in Care Home and Hospice settings are not presented at PCT Cluster level due to low numbers. Relief of pain ratings in the last two days by PCT Clusters were published previously in web appendix A.
Across all nine questions, Bournemouth and Poole and Dorset PCT Cluster was consistently rated in the top 20 per cent. The ratings for one PCT Cluster (Inner North East London) are not reported due to low numbers.
Of the remaining 50 PCT Clusters, 20 did not receive any green ratings for Patient Care and Support. The top ten PCT Clusters can be seen in Figure 3: Count of green benchmark ratings (highest scoring 20 per cent) for Patient Care and Support by PCT Clusters across nine questions.
A range of questions were asked about patient preferences and choice and also about support of the family, friends and carers. Two of the six questions reported here by PCT Clusters cover Patient Preferences: no decisions made that the patient would not have wanted and whether the patient had sufficient choice about where they died.
The other four questions focus on support of the families over the last three months, at the time of death and following the bereavement: whether they were involved in care decisions as much as they wanted, whether they received sufficient help and support at the time of death, whether staff dealt with them in a sensitive manner and whether they talked to anyone from health, social or bereavement services since the death.
Ratings regarding whether the patient was told in a sensitive manner they were going to die are not presented at PCT Cluster level due to low numbers.
Five questions in this domain by PCT Clusters were published previously in web appendix A: whether the patient was involved in care decisions as much as they wanted, whether they expressed a preference about where to die and whether they died in the right place; and whether the family received as much help and support from services when the patient was at home and were able to discuss concerns and worries with their GP.
Across the six questions, the North of Tyne PCT Cluster was rated in the top 20 per cent in five. The ratings for one PCT Cluster (Inner North East London) are not reported due to low numbers. Of the remaining 50 PCT Clusters, 23 did not receive any green ratings for Patient Preferences and Support of Family.
The top nine PCT Clusters can be seen in Figure 4: Count of green benchmark ratings (highest scoring 20 per cent) for Patient Preferences and Support of Family by PCT Clusters across six questions.
The aim of the first national survey of bereaved people was to assess experiences of care in the last three months of life. A second national survey is underway, which will allow comparison with the first set of findings. Also, results from the first can be combined with the second (when available) to allow more robust regional reporting. The size of the confidence intervals reported here indicate some caution should be taken when interpreting results.
The regional variations reported could be explained by a number of factors. These include differences in the sample population, such as proportion of non–UK born or age distribution (Gomes et al, 2011) and differences in the environment, such as whether areas were predominantly rural or urban, and what the level of area deprivation was (Pring & Verne, 2012). There may also be real or perceived differences in service provision or priorities (Gomes et al, 2011; Ruth et al, 2010).
The findings from this survey are used by a range of users to evaluate the quality of end of life care.
The Department of Health commissioned this survey to follow up on a commitment made in the End of Life Care Strategy. The results of this survey will be used to inform policy decisions and to enable evaluation of the quality of end of life care in different settings, across different ages and different causes of death.
Quality of end of life care, as measured through this survey, is also included as an indicator in the NHS Outcomes Framework for which these results provide a baseline.
Other key users comprise a range of organisations and people involved in end of life work. These include the National End of Life Care Intelligence Network, the National End of Life Care Programme, academics, health researchers and charities.
Commissioners and providers of care will also find the results helpful. East Berkshire PCT used evidence from the pilot VOICES survey to underpin training and service developments and inform future priorities (National End of Life Care Programme Newsletter, 2012).
It is anticipated that members of the public, including survey respondents, will have a particular interest in the results of this survey.
An article examining the findings of the National Bereavement Survey (VOICES) 2011 by area deprivation is planned by ONS for publication Spring 2013.
The large amount of free text collected from respondents as part of the National Bereavement Survey (VOICES) 2011 has been anonymised so that approved researchers can apply to analyse this wealth of data. For information about becoming an approved researcher and details related to these data please contact the End of Life Care Analysis Team in the first instance on EOLC@ONS.gsi.gov.uk
There is a full report on the Department of Health website “Quality of care at the end of life: First national survey of bereaved relatives in England”
A copy of the VOICES questionnaire used in this survey can be found in web appendix B of the full report on the Department of Health website.
A summary of 11 key questions are also reported for PCT Clusters in web appendix A, in the full report available on the Department of Health website.
A detailed report on the ONS website “National Bereavement Survey (VOICES), 2011” gives full findings in reference tables and describes in full the sampling and survey methods used.
The Department of Health, who commissioned this survey, and the Office for National Statistics are grateful to all the respondents who shared their experiences and opinions in the year following their bereavement.
Communities and Local Government (2011) The English Indices of Deprivation 2010, Department for Communities and Local Government.
Department of Health (2008) End of Life Care Strategy – promoting high quality care for all adults at the end of life. London: HMSO.
Department of Health (2012) NHS Outcomes Framework 2013/14.
Gomes B, Calanzani N, Higginson IJ. (2011) Local preferences and place of death in regions within England 2010. National End of Life Care Intelligence Network.
Hunt KJ, Shlomo N, Richardson A, Addington–Hall JM. (2011) VOICES Redesign and Testing to Inform a National End of Life Care Survey. Southampton: University of Southampton.
National End of Life Care Programme Newsletter (2012) “Learning from the ‘experts’ – taking account of the VOICES survey: a case study”. October.
Pring A, Verne J. (2012) Deprivation and death: variation in place and cause of death. National End of Life Care Intelligence Network.
Ruth K, Pring A, Verne J. (2010) Variations in Place of Death in England. National End of Life Care Intelligence Network.
The Statistics and Registration Service Act of 2007 authorises ONS to use the data received in connection with death registrations for statistical purposes, including the conducting of surveys. The Code of Practice for Official Statistics which governs ONS’s use of this private information for statistical purposes states clearly how confidentiality will be maintained (Principle 5). A copy of this can be found on the ONS website. The survey plans and materials were reviewed by members of the ONS Ethics Advisory Panel. At all stages of the process procedures were put in place to comply with the Data Protection Act 1998 and the Code of Practice for Official Statistics.
Survey administration and methods: All processes related to the administration of this survey were carried out within ONS. As is standard in most postal surveys, there were three mail–outs to respondents. Full details can be found in the previously published reports. The mailing system, including the prepaid return envelope, was suitable for use abroad and for returning items from abroad. This permitted the inclusion of informants whose usual residence was outside of the UK (about 500).
Confidence intervals provide a measure of the variability, error or uncertainty surrounding a value. They are especially important when using findings from a sample rather than the whole population and are calculated around the estimated value to give a range in which the true value for the population is likely to fall. The width of the confidence interval depends to a large extent on the sample size and so larger studies tend to give more precise estimates of effects (and hence have narrower confidence intervals) than smaller studies. Thus, wide confidence intervals show greater uncertainty and narrow ones show greater confidence in the estimated value.
A confidence interval may be reported for any level of confidence but most commonly is reported at the 95 per cent level. This can be taken to mean that there is only a 5 per cent chance that the true population value lies outside the confidence interval. Confidence intervals are also used to guide interpretation of the data when comparing change over time, examining differences between geographical areas or between certain groups, such as sex or age. As a general rule and for the same measure, if the confidence interval around one value overlaps with the interval around another, we cannot say with certainty that there is more than a chance difference between the two values. For example, for a value of 45.3 at time 1 with a 95% confidence interval of 42.1 – 48.5 and a value of 47.5 at time 2 with a 95% per cent confidence interval of 44.2 – 50.8, the intervals overlap and so we could not say with certainty that there had been a [significant] change over time. Confidence intervals should therefore be taken into consideration when making comparisons between figures.
The selection of a representative sample of approximately 49,000 was undertaken in SAS to ensure representation of all strata and to produce probability sampling weights and stratification values. Non–response weights were created to adjust for bias in response using the same five characteristics: age and sex of the deceased, cause of death, place of death and geographical spread. Although the sampling method was designed to ensure that the sample represented the deaths in England for this period taking these five factors into account, the sampling stratification was designed for England–level analysis rather than PCT Cluster analysis. Analysis was undertaken in STATA (version 11) using the survey commands.
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Special extracts and tabulations of data from the National Bereavement Survey (VOICES), 2011, for England are available to order for a charge (subject to legal frameworks, disclosure control, resources and agreement of costs, where appropriate). Such enquiries should be made to:
End of Life Care Team
Life Events and Population Sources Division
Office for National Statistics
Gwent NP10 8XG
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|Julie Messer||+44 (0)1633 456021||End of Life Care Analysis Team||EOLC@ons.gsi.gov.uk|