The National Bereavement Survey (VOICES) 2012 was commissioned by the Department of Health and administered by the Office for National Statistics (ONS). The End of Life Care Strategy published by the Department of Health 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 (Department of Health, 2008).
This Statistical Bulletin reports the main results of the second national survey of the bereaved asking about end of life care in the last three months. Full results with confidence intervals are available in the accompanying reference tables. This survey uses the VOICES-SF questionnaire: the Views of Informal Carers – Evaluation of Services (VOICES) short-form (see Background Note 3).
To aid interpretation, results are presented with confidence intervals. Confidence intervals are useful for allowing comparison of groups or areas and for indicating the amount of uncertainty there is around a figure (the larger the interval, the greater the uncertainty).
A downloadable reference file containing all of the results tables for the 2012 VOICES survey is available from the ONS website.
Ratings of the overall quality of care across all services in the last three months of life were reported by most respondents (93%). Of these 13% rated the care as outstanding, 31% as excellent, 34% as good, 14% as fair and 9% as poor (see ‘Overall quality of care’ table in the downloadable reference file). Figure 1 presents ratings of overall quality of care across all services in the last three months of life, for 2012.
Further details of quality of care by setting or service and by cause and age at death are also provided (see ‘Quality of care 3 months’ table in the downloadable reference file).
Table A presents results for overall quality of care across all settings, where these were rated as Outstanding or Excellent by Cause of Death and Place of Death. The findings reported for overall quality of care are not independent of each other. For example, combining cause of death and place of death shows that overall care rated as Outstanding or Excellent was greatest for cancer patients who died at home (63%). This may in part be due to specialist palliative care community services supporting people choosing to die at home. Historically, these services have tended to focus on those dying of cancer. However, recent figures show that this is changing, with 17% of people using such services having a primary diagnosis other than cancer (National Council for Palliative Care NCPC, 2012). The overall care for those who died in hospital was least likely to receive an Outstanding or Excellent rating, irrespective of cause of death.
|Cause of Death||Place of Death|
Another aspect of care analysed was whether staff treated the patient with dignity and respect. Staff in hospices received the highest proportion showing dignity and respect ‘always’ in the last three months (84% for hospice doctors and 82% for hospice nurses). Hospital staff received the lowest proportion showing dignity and respect always (59% for hospital doctors and 52% for hospital nurses). Figure 2 presents information on how often the patient was treated with dignity and respect in the last three months by setting or service provider.
Further details of responses related to dignity and respect reported by: the different care settings and services used in the last three months and the last two days of life, and by cause and age at death are provided (see ‘Dignity and Respect 3 months’ and ‘Dignity and Respect 2 days’ tables in the downloadable reference file).
It has previously been established that there are significantly increased odds of patients receiving excellent care and always being treated with dignity and respect from services based in the community for the least deprived areas compared with the most deprived (ONS, 2013). Area deprivation did not show similar effects for hospitals settings.
Two questions were asked about coordination of care. One question was asked in relation to those patients who had spent some or all of the last three months at home, about whether community services worked well together. For those who responded to this question, 45% said that the services definitely worked well together and a further 41% said that the services worked well together to some extent.
The second question was asked in relation to those patients who had spent some time in hospital in the last three months and whether hospital services worked well with the GP and other community services. Here, 33% reported these services definitely worked well together and a further 36% said they worked well to some extent. Statement 8 of the National Institute for Health and Clinical Excellence (NICE) Quality standards for End of Life Care for Adults emphasises the importance of effectively coordinated care across all relevant settings (NICE, 2011). See ‘Coordination of care’ table in the downloadable reference file.
Figure 3 presents results on how well pain was relieved during the last three months of life, by care setting. Questions on relief of pain were relevant only for certain patients. Where it was relevant, relief of pain was reported as being provided ‘completely, all of the time’ most frequently in hospices (63%) and least frequently among those at home (19%). For further information, see ‘Relief of pain 3 months’ and ‘Relief of pain 2 days’ tables in the downloadable reference file.
Two-thirds of respondents (64%) reported that no decisions had been made about care which the patient would not have wanted. However, 17% of respondents said yes to this question.
Respondents reported that the majority of patients (86%) were involved in decisions about their care as much as they wanted. Statement 3 of the NICE Quality standards for End of Life Care for Adults emphasises the importance of people approaching the end of life feeling satisfied that they have been able to discus, record and review their needs and preferences and take a role in planning and decision-making, if they would like to do so (NICE, 2011). Further details about decision making around care are reported in the ‘Patients needs and Preferences 3 months’ tables in the downloadable reference file, with results presented by cause of death, place of death and age at death.
Figure 4 presents information on people’s preferred place of death and the actual place of death. Only about 40% of family members reported that their relative had expressed a preference of where they would like to die and gave further details. For those who expressed a preference, the majority preferred to die at home (81%) although only about half actually died at home (49%). However, the most commonly recorded place of death was a hospital (52%) when a minority expressed a preference for this (2%). Preference for dying at home is more common in cancer patients but still common in those with a non-cancer diagnosis (Murtagh et al, 2012). However, for those with a non-cancer diagnosis, the presence of family or informal carers is key to remaining at home (Murtaugh, 2012).
The place of death description of ‘Somewhere else’ included responses where place was not very specific; common responses were ‘with family members’, a specified country, or statements such as ‘on the dance floor’ or ‘on the golf course’. For further information, see the ‘Preferred priorities’ table in the downloadable reference file.
One set of questions asked about the respondent and family of the deceased and the support they received and whether they were dealt with sensitively. More than half of respondents (60%) said that they had definitely been given enough support at the time of the death. A further 26% said that they had to some extent.
When asked whether they had talked to anyone from any support services since the death, most respondents reported that they had not, and did not want to (68%). However, 18% said that they had not, but would have liked to. This was higher for female respondents (20% versus 15% for males) and younger respondents (22% for under 60 years and 15% for those 60 years and over). The NICE Quality standards for End of Life Care for Adults (Statements 7 and 14) focuses on the importance of sensitive communication to those closely affected by death and the need to offer timely support ‘appropriate to their needs and preferences’ (NICE, 2011). Further information is presented in the ‘Support for carer 3 months’ and ‘Support for carer 2 days’ tables in the downloadable reference file.
Figure 5 presents ratings of overall quality of care across all services in the last three months of life, for people with and without dementia mentioned on the death certificate. For the whole sample, just 15% of people had dementia or senility mentioned on their death certificate. This varied across the cause of death groups. Where the underlying cause of death was cardiovascular disease, 10% also had a mention of dementia. For cancer deaths, the comparable figure was only 4% of cancer deaths while 26% of other deaths had dementia mentioned. About one-third of care home deaths had dementia mentioned (35%) and almost one-quarter of patients aged 80 years or over had dementia mentioned (23%).
There was no significant difference in respondents’ rating of the overall quality of care as outstanding or excellent, for those with or without dementia mentioned (Outstanding: 13% where dementia was mentioned compared with 13% for those with no mention; Excellent: 33% where dementia was mentioned compared with 31% for those with no mention). However, respondents of patients with mention of dementia were less likely to rate the overall quality of care as poor (7.5% versus 9.4%). For further information, see the ‘Dementia’ tables in the downloadable reference file.
Although the VOICES survey was not able to determine those living with dementia but only those where dementia was mentioned on the death certificate, this group has been highlighted because it is known that people with dementia have one of the highest uses of social care (Georghiou et al, 2012). Further, older patients with dementia are most likely to die in care homes (Murtagh et al, 2012).
The sample for the 2012 VOICES survey was selected from the 158,445 adult deaths registered between 1st January 2012 and 30th April 2012, which were extracted from the death registration database held by ONS. Records were removed where cause of death and place of death were outside the criteria (see below), where the informant’s name and address was missing and where the informant was designated an official (See Background Note 2).
From the 144,000 deaths that were eligible for the survey, a stratified sample of 49,207 was drawn for the actual survey.
Informants were contacted between four and 11 months following the death, the recommended time for such surveys to balance the need for privacy and sensitivity during early bereavement while ensuring reliable recall about care provision (Hunt et al, 2011). The mailing period was also timed to exclude Christmas and the anniversary of the death. The VOICES-SF questionnaire was used: the Views of Informal Carers – Evaluation of Services (VOICES) short-form (see Background Note 3).
This was determined from information recorded on the death certificate.
Male (46% of the selected sample).
Female (54% of the selected sample).
All details relevant to the cause of death on the death certificate are coded using the International Statistical Classification of Diseases and Related Health Problems – Tenth Revision, or ICD–10 (WHO, 1992).
Deaths were excluded where the cause of death was accident, suicide or homicide (ICD–10 codes S000 to Z999) (2,868, 1.8%). The following deaths were included where they were recorded as the underlying cause:
Cardiovascular Disease (CVD): ICD–10 codes I000 to I999 (29% of the selected sample).
Cancer ICD–10 codes C000 to D489 (29% of the selected sample).
Other: ICD–10 codes A000 to R999 (excluding CVD and Cancer) (42% of the selected sample).
Deaths were excluded where the place of death was recorded as 'Elsewhere', which includes external sites (such as roads or parks), public venues (such as shops or restaurants), work places and any other place which could not be identified to a specified location type (2,144, 1.4%). Location types that were included were grouped in the following way.
Home: the home of the deceased. (23% of the selected sample).
Hospital: NHS and private (52% of the selected sample).
Care Homes (including residential homes) (20% of the selected sample).
Hospices (6% of the selected sample).
In some cases, it may be appropriate to group residential homes with home, since these all describe the usual residence of the person. However, for the purposes of the 2012 VOICES survey, residential homes were grouped with care homes because the survey addresses the quality of care provided by staff. Figure 6 presents the distribution of the sample, by place and cause of death.
Deaths of people aged under 18 years were excluded, leaving an age range of 18 to 111 years for this time period. Ages were split into three groups.
Under 65 years (13% of the selected sample).
65 to 79 years (28% of the selected sample).
80 years or older (59% of the selected sample).
This older age group becomes of greater importance as the number of older adults increases (ONS, 2011a), mortality rates fall (ONS, 2012) and people live longer (ONS, 2011b). Figure 7 presents the distribution of the sample by cause of death and age at death.
To ensure a geographical spread, death records were assigned to a Primary Care Trust (PCT) cluster based on the postcode of usual residence of the deceased. In 2012, there were 51 PCT Clusters covering the whole of England.
Of the sample of 49,207 deaths, 22,635 completed responses were received from informants, giving a response rate of 46.0%. The overall response rate is comparable to that achieved in a regional postal survey of the bereaved using the same questionnaire (40.0%) (Berkshire and Isle of Wight VOICES pilot survey, Hunt et al, 2011) and the first National Bereavement Survey (VOICES) (45.7%).
The ‘Response rates’ table presents the response rates by characteristics of the deceased. The ONS mortality database contains the name and address of informants of the death and, in most cases, the relationship of the informant to the deceased. No further information about the informant was available so it was not possible to estimate response rates based on respondent details. Although the questionnaire is sent to the informant on the death certificate, they are encouraged to pass on the questionnaire to another family member if deemed more appropriate. In the questionnaire, respondents were asked their age, sex, ethnic group and relationship to the deceased. Age and sex of the respondent is reported in the results, but was missing in 1.9% of cases for age, 6.5% of cases for sex, 2.9% for ethnic group and 2.6% for relationship to the deceased. Of those who stated the latter, 99% were relatives.
All processes related to the administration of this survey were carried out within ONS. For details of the Survey Process, Data Scanning and Capture and Mechanisms for dealing with distress and complaints, see the bulletin for the first National Bereavement Survey (VOICES) and the Quality and Methodology Information paper for this survey.
The findings from this survey will be 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.
The independent body, NHS England, are taking this work forward. Quality of end of life care is one of the key areas in the NHS Outcomes Framework. This has relevance for Domain 2 ‘Enhancing quality of life for people with long-term conditions’ and Domain 4 ‘Ensuring that people have a positive experience of care’. Indicator 4.6 “Improving the experience of care for people at the end of their lives” uses data from the National Bereavement Survey (VOICES) to gather bereaved carers’ views on the quality of care in the last three months of life.
Other key users include the 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. Service providers and policy makers also use the information to help determine their needs and assess their performance.
It is anticipated that members of the public, including survey respondents, will have a particular interest in the results of this survey.
The findings from the first National Bereavement Survey (VOICES), 2011 and the findings published by PCT Cluster level were published in 2012. A further report examined some of the key findings by area deprivation (IMD) and was published in June 2013.
An accompanying report was also published on the Department of Health website “First national VOICES survey of bereaved people – key findings report” A copy of the VOICES questionnaire used in this survey can be found in web appendix B.
A Quality and Methodology Information paper for this survey is also available.
The findings from the first and second National Bereavement Survey (VOICES) will be reported in the Autumn at Clinical Commissioning Group (CCG) and Local Area Team (LAT) level.
The Department of Health commissioned the first two VOICES surveys carried out in 2011 and 2012 by the Office for National Statistics. From 1st April 2013, responsibility for this area of work was transferred by the Department of Health to NHS England.
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.
Department of Health (2008) End of Life Care Strategy - promoting high quality care for all adults at the end of life. London: HMSO.
Georghiou T, Davies S, Davies A, Bardsley M. (2012) Understanding patterns of health and social care at the end of life. London: Nuffield Trust.
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.
Murtagh FEM, Bausewein C, Petkiva H, Sleeman KE, Dodd RH, Gysels M, Johnston B, Murray S, Banerjee S, Shipman C, Hansford P, Wakefield D, Gomes B, Higginson IJ. (2012) Understanding place of death for patients with non-malignant conditions: a systematic literature review. National Institute for Health Research Service Delivery and Organisation Programme.
National Council for Palliative Care NCPC. (2012) National survey of patient activity data for specialist palliative care services: MDS full report for the year 2010-2011. London: NCPC.
National Institute for Health and Clinical Excellence (NICE) Quality standards (2011). End of life care for adults: quality standard QS13.
Office for National Statistics (2011a) National Population Projections, 2010–Based Statistical Bulletin.
Office for National Statistics (2011b). Five times more centenarians than in 1980.
Office for National Statistics (2012) Mortality in the United Kingdom, 2010.
Office for National Statistics (2013). National Bereavement Survey (VOICES) by Area Deprivation, 2011.
World Health Organisation (1992) International Statistical Classification of Diseases and Related Health Problems – 10th Revision. WHO: Geneva, Switzerland.
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 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 ONS Code of Practice.
Stratified sample: 9,433 (1.8%) of deaths were removed from the sample as the informant was designated an official or the informant name and address fields were blank on the ONS database. Sampling methods were implemented to ensure that the sample represented the deaths in England for this period according to sex of the deceased, cause of death, place of death, age and regional spread (based on PCT Clusters). Of the sample drawn, 15% were deaths that had been referred to a coroner and the remaining 85% had not. For further details see the Quality and Methodology Information paper for this survey.
The VOICES questionnaire: The survey used the VOICES questionnaire short form (VOICES-SF), amended slightly according to recommendations arising from the pilot survey (Hunt et al, 2011). Several questions were further clarified and, for the first time, an additional over-arching question was added. This asked: ‘Overall, and taking all services into account, how would you rate his / her care in the last three months of life?’ The layout of the questionnaire was slightly amended to accommodate the needs of a large national survey. Space for respondents to write their own comments was consolidated into one large area at the end of the questionnaire, for separate analysis. The VOICES-SF questionnaire is personalised using the appropriate pronouns according to the sex of the deceased. All questionnaires were printed in booklet form at ONS using a mail-merge approach to add the details in the letter, the Study ID number on every page and the appropriate gender of the deceased. Further details can be found in the bulletin for the first National Bereavement Survey (VOICES) and in the Quality and Methodology Information paper for this survey.
Other measures: Index of Multiple Deprivation (2010) for England. This index assesses deprivation across seven domains: Income, Employment, Health Deprivation and Disability, Education, Skills and Training, Barriers to Housing and Services, Crime and Living Environment (Communities and Local Government, 2011). The indices were applied in quintiles at the Lower Super Output Area (LSOA) level using the postcode of the deceased’s usual residence. There are 32,482 LSOAs in England, each with a minimum population of 1,000.
Sampling and Analysis: 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. Response weights were created (see the bulletin for the first National Bereavement Survey (VOICES) and in the Quality and Methodology Information paper for this survey. The sampling weight and the non-response weight were combined by taking the product of the two. Analysis was undertaken in STATA using the survey commands designed to handle complex survey data and to analyse the response using the sample and non-response weights. For comparisons across groups, the computed statistic is adjusted for the survey design (the F statistics) is reported, with the significance (p) value.
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.
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Special extracts and tabulations of data from the National Bereavement Survey (VOICES), 2012, 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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|Julie Messer||+44 (0)1633 456021||Life Events and Population Sources Division, Office for National Statistics||EOLC@ons.gsi.gov.uk|