This bulletin presents findings from the National Bereavement Survey (VOICES- Views of Informal Carers- Evaluation of Services) at area deprivation level (See Background Note 1) for four key topics: quality of care; dignity and respect; support for relatives, friends or carers and choice about where patient died. Multivariate analyses to examine differences in care between deprivation quintiles are presented, unadjusted and adjusted for confounding factors such as age, sex and cause of death.
The National Bereavement Survey (VOICES) 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.
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 2 and 3). A sample questionnaire, with the male pronoun, can be found in web appendix B of the DH report.
Results are presented with confidence intervals (See Background Note 4), to aid interpretation. Confidence intervals are useful for indicating the amount of uncertainty there is around a figure and for allowing comparison of groups or areas. Unless otherwise stated, differences mentioned in the text have been found to be statistically significant at the 95% confidence level.
While care in the hospital setting was frequently rated the poorest, this did not vary significantly by deprivation quintile. However, area deprivation was strongly associated with care from community services. These findings are explored further under each separate sub-heading.
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 (see Background Note 5). The postcode of the deceased’s usual residence, recorded on the death certificate, was used to assign each deceased person to a quintile of deprivation at LSOA, where quintile 1 is the most deprived and quintile 5 the least deprived (Communities and Local Government, 2011).
The sample size of each deprivation quintile varied slightly from 8,954 in deprivation quintile 5 (least deprived) to 10,283 in deprivation quintile 3. Response rates varied from 37% in deprivation quintile 1 (most deprived) to 52% in deprivation quintile 5 (least deprived).
The age distribution of the deprivation quintile samples varied, with deprivation quintile 1 having the youngest sample population (43% who were aged 80 years or more) and deprivation quintile 5 having the oldest (58% aged 80 years or more).
There were significant variations between deprivation quintiles across three of the four place of death groups. More people in the most deprived quintile died in hospital (59%) compared with the least deprived quintile (52%). In contrast, more people in the least deprived quintile died in a care home (21%) or a hospice (7%) compared with people in the most deprived quintile (14% and 5% respectively).
There were also significant differences between deprivation quintiles across two of the three broad cause of death groups. More people in the least deprived quintile died from cancer (30%) compared with the most deprived quintile (27%). Whereas, more people in the most deprived quintile died from ‘Other’ causes (41%) compared with those in the least deprived quintile (37%). There were no significant differences for cardiovascular disease.
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 deprivation quintiles, from 7% in the least deprived quintile to 12% in the most deprived quintile.
The level of deprivation also varied across regions with just 4% of the most deprived quintile in the East of England, to 24% of the most deprived quintile in the North West of England.
The overall quality of care that patients received in their last three months of life was significantly different between the most deprived quintile and the least deprived quintile. Forty-four per cent of respondents whose relative or friend lived in the least deprived quintile rated the care the patient received in the last three months of life as outstanding or excellent compared with 39% in the most deprived quintile (Figure 1).
Quality of Care was assessed across different care settings. Six settings are reported by deprivation quintile: out of hours, district and community nurses, GPs, care home, hospital doctors and hospital nurses. Quality of Care in the hospice setting is not presented at deprivation quintile level due to low numbers.
Across all six care settings, only care from a GP was significantly different between the most and least deprived quintiles. Thirty-seven per cent of respondents whose relative or friend lived in the least deprived quintile rated the care the patient received from the GP as excellent compared with 30% in the most deprived quintile. There were no significant differences across the remaining five care settings (Figure 2).
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 deprivation quintile: district and community nurses, GPs, care home, hospital doctors and hospital nurses. Dignity and respect in the hospice setting is not presented at deprivation quintile level due to low numbers.
Across all five care settings, patients who lived in the least deprived quintile were more likely to be treated with dignity and respect from district and community nurses and GPs all of the time compared with those patients that lived in the most deprived quintile. The biggest difference was seen for GPs; 77% of patients in the least deprived quintile were always treated with dignity and respect compared with 64% of patients in the most deprived quintile (Figure 3).
There were no significant differences between the most deprived quintile and least deprived quintile in the dignity and respect shown to patients from care homes or by both hospital doctors and nurses.
Significantly more respondents of patients who lived in the least deprived quintile said they definitely received enough help and support at the time of the patient’s death (62%) compared with respondents of patients who lived in the most deprived quintile (56%) (Figure 4).
To better understand the effects of deprivation on end of life care, multivariate regression analyses were performed to observe whether the differences in care between the least and most deprived areas remained when controlling for confounding factors such as the age and sex of the deceased and the cause of death.
A logistic regression modelling odds of receiving excellent care was run using deprivation quintile as the predictor variable. This found the difference between the most deprived quintile and the least deprived quintile was significant at the p<0.001 level. Results indicated the odds of receiving excellent care increased by 23% (a factor of 1.23) for the least deprived quintile (quintile 5) compared to the most deprived quintile (quintile 1). When age, sex and cause of death were added into the regression model the difference between the most and least deprived quintile remained significant at the p<0.001 level.
Looking at the quality of care across different settings, deprivation quintile was a significant predictor of excellent care from district and community nurses, GPs and in care homes, with the odds of receiving excellent care in these establishments increasing by 15%, 36% and 20% respectively for the least deprived quintile compared with the most deprived quintile. When age, sex and cause of death were entered into the regression model, deprivation quintile remained a significant predictor of whether or not a patient received excellent care across all three settings (Table 1).
|Setting or service provider||Odds ratio (least deprived compared with the most deprived)||Adjusted¹ odds ratio (least deprived compared with the most deprived)|
|Overall quality of care||1.23||***||1.23||***|
|Out of hours||1.11||1.10|
|District and community nurses||1.15||*||1.16||*|
Deprivation quintile was also a significant predictor of whether or not the patient was always treated with dignity and respect from services in the community such as district and community nurses and GPs. Logistic regression found the odds of always being treated with dignity and respect by district and community nurses increased by 36% (a factor of 1.36) for the least deprived quintile compared with the most deprived quintile. For care received from a GP the odds of always being treated with dignity and respect increased by 80% (a factor of 1.80) for patients in the least deprived quintile compared with those in the most deprived quintile.
When age, sex and cause of death were entered into the regression model the differences between the most and least deprived quintile remained significant for both district and community nurses and GPs (Table 2). A report by Raleigh and Frosini (2012) supported these findings showing that GP practices that perform poorly on both clinical outcome measures and patient experience are more likely to be located in deprived areas.
No significant differences were found between deprivation quintiles and the dignity and respect shown in establishments such as care homes and hospitals.
|Setting or service provider||Odds ratio (least deprived compared with the most deprived)||Adjusted¹ odds ratio (least deprived compared with the most deprived)|
|District and community nurses||1.36||***||1.32||**|
Deprivation quintile was a significant predictor of whether or not the patient had enough choice about where they died, with the odds increasing by 48% (a factor of 1.48) for patients living in the least deprived quintile compared with the most deprived quintile. When age, sex and cause of death were entered into the regression model, the differences between the most and least deprived quintile remained significant at the p<0.001 level.
|Choice about where patient died||Odds ratio (least deprived compared with the most deprived)||Adjusted¹ odds ratio (least deprived compared with the most deprived)|
|Enough choice about where they died||1.48||***||1.48||***|
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 are 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 (2012).
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 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.
A report on the Department of Health website “Quality of care at the end of life: First national survey of bereaved relatives in England” 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.
A copy of the VOICES questionnaire used in this survey can be found in web appendix B of the 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 report available on the Department of Health website.
A detailed report on the ONS website “National Bereavement Survey (VOICES), 2011” gives findings in reference tables and describes in full the sampling and survey methods used.
A report on the ONS website “National Bereavement Survey (VOICES) by PCT Clusters, 2011” provides findings at PCT cluster level for four key topics; quality of care; dignity and respect; patient care and support; and patient preferences and support for relatives, friends or carers.
For details related to these data please contact the End of Life Care Analysis Team in the first instance on EOLC@ONS.gsi.gov.uk
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.
Gartner A, Farewell D, Dunstan F and Gordon E (2008) “Differences in mortality between rural and urban areas in England and Wales, 2002-04”. Health Statistics Quarterly, 39, p 6-13.
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.
Raleigh V, Frosini, F (2012) Improving GP services in England: exploring the association between quality of care and the experience of patients. The King’s Fund.
A measure of area deprivation, the Index of Multiple Deprivation (IMD) 2010, for England was used to investigate how care differed across deprivation quintiles (each quintile comprises a fifth of areas ranked according to their relative deprivation) in England. The IMD combines seven distinct domains of data (income; employment; health deprivation; education, skills and training; barriers to housing services; crime; and living environment) to produce a single measure of relative deprivation for each lower super output area (LSOA) in England. LSOAs are grouped into quintiles according to the rank of their deprivation score such that each quintile has an equal resident population. Although the IMD includes a health domain as one of its indices, recent studies have found little evidence to support a possible influence on findings, concluding the presence or absence of the health domain in the IMD has little or no effect in biasing the relationship between health and deprivation (Gartner et al.,2008).
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% level. This can be taken to mean that there is only a 5% 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 respondents 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. Analysis was undertaken in STATA (version 11) using the survey commands.
A list of the names of those given pre–publication access to the statistics and written commentary is available in the pre–release access list. The rules and principles which govern pre–release access are featured within the Pre–release Access to Official Statistics Order 2008.
ONS official statistics are produced to the high professional standards set out in the Code of Practice for Official Statistics. They undergo regular quality assurance reviews to ensure that they meet customer needs. They are produced free from any political interference.
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
Tel: +44(0) 1633 456021
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|Kara Banahan||+44 (0)1633 456021||End of Life Care Analysis Team||EOLC@ons.gsi.gov.uk|