Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability

Abstract

Background

People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited.

Aims

This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’

Methods

A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis.

Results

Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified.

Conclusions

Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.

Introduction

Nurses working in a variety of settings play an important role in supporting people during their end-of-life period (International Council of Nurses, 2012). Among the population they support will be people with intellectual disability, but less is known regarding the nature of nursing involvement with this group of people. This paper seeks to address this gap in knowledge by using data relating to nursing care that were obtained from a wider UK-based study of care at end of life for people with intellectual disability. While this is a UK-based study, it is important to note that the ‘fundamental’ role of the nurse in the provision of high-quality end-of-life care has been stressed at an international level (International Council of Nurses, 2012). Furthermore, the need to improve palliative and end-of-life provision for people with intellectual disabilities has also been identified as an area of international concern (Tuffrey-Wijne et al., 2016). The findings therefore have relevance beyond the UK.

The inequalities in health experienced by people with intellectual disability have been widely documented (Emerson et al., 2012a), and such inequalities appear to impact on care at end of life (Care Quality Commission, 2016). Heslop et al. (2013) found that people with intellectual disability were less likely than the non-disabled comparator cases to receive palliative care and that end-of-life planning was poor. They also found that fewer people with intellectual disability died in hospital when compared with the wider population, but that twice the number of people with intellectual disability, compared to the wider population, died in residential settings. This paper focuses on people with intellectual disability who had been living in an intellectual disability care setting. Studies in the UK and The Netherlands, among other places, show that a large proportion of deaths of people with intellectual disability happen in the place in which they usually live. A person’s ‘home’ is seen as the most appropriate place for them to die (Bekkema et al., 2015). Staff working in supported living or residential care settings may feel that hospital deaths are something to be avoided, but may also have idealised views of end-of-life care (Todd, 2013), and may not have received relevant training in end-of-life care (National End of Life Programme, 2011). They may not be adequately prepared to recognise and meet such needs. Interestingly, Bekkema et al. (2015) found that while participants in their study did not view a lack of nursing or end-of-life expertise as a barrier to the provision of end-of-life care, they nonetheless identified it as one of the key factors that influenced decision-making as to whether an individual requiring such care needed to be moved to another care setting. It must be noted, however, that this study was undertaken in The Netherlands, where systems of care and support are different. Although many people with intellectual disability live and die in social care settings, nurses may be involved in supporting both the individual and those caring for them. However, preparation for such a role may be limited, with the nursing curriculum in the UK being criticised both for a lack of sufficient focus on death and dying (Cavaye and Watts, 2014) and for a limited focus on the needs of people with intellectual disability (Beacock et al., 2015).

Whether people with intellectual disability receive care at end of life at home, in a hospice or in hospital, nurses potentially have a key role to play either in providing direct care or in supporting families or other carers in the provision of such care. They have a professional responsibility to work in partnership with others to provide person-centred care, including compassionate care during the end-of-life period (Nursing and Midwifery Council, 2015). In particular, given the inequalities in health and healthcare noted above they also have a duty to advocate on behalf of those they support, promote and uphold human rights, and raise concerns when appropriate care is not provided (Nursing and Midwifery Council, 2015), However, research regarding the role of nurses in this context is limited. Tuffrey-Wijne et al. (2008) surveyed 543 palliative care professionals regarding their experience of working with people with intellectual disabilities. The largest professional group (59%) within their sample was nurses, of whom 62% reported that they had received no specific education in relation to intellectual disabilities. In a survey of community nurses in Ireland undertaken by Baily et al. (2014) a response rate of 32% (n = 94) was achieved. Of those responding, 35.1% (n = 33) had been involved in providing palliative care for people with intellectual disability in the previous 3 years, with many providing support for individuals within their own home. However, participants reported feeling that their lack of education regarding intellectual disability and limitations in their communication skills negatively impacted on their ability to provide such care and support; 76.6% (n = 72) requested further education regarding the health needs of people with intellectual disability.

Where people with intellectual disability are cared for at end of life in hospitals, this may be in general wards. Given that age and cause of death among this population differ from those of the wider population (Glover et al., 2017) and that many of their deaths are unexpected (Heslop et al., 2013), it may be that end of life is not recognised on admission, which further highlights the need for good quality care to be provided for all admissions. A small-scale postal audit undertaken by Cooper et al. (2014) involving 110 such nurses indicated that they felt confident in providing end-of-life care for people with intellectual disability. Yet only three had received any specific education and only four were aware of assessment tools developed for use with this patient group. This indicates that confidence may exceed adequate levels of competence.

Within the UK and Ireland, nurses can undertake undergraduate programmes leading to a specialist degree/entry to the nursing register in nursing care of people with intellectual disability. Such nurses then go on to work in a wide range of settings and provide care and support to people with intellectual disability across the life span. It thus follows that they may also be involved, in some capacity, in the provision of care at end of life. Once again, however, research regarding their role in this is lacking, although Baily et al. (2014) note that intellectual disability nurses often feel that they lack the specialist knowledge and skills relating to palliative care.

For the reasons previously stated, nurses with a wide range of backgrounds, working with others, thus potentially have a key role to play in ensuring that people with intellectual disability receive high-quality end-of-life and palliative care. However, there is evidence to suggest a lack of preparedness or confidence to do so, and some have pointed to the need for increased education in this domain (Baily et al., 2014; Bekkema et al., 2014) and to the importance of collaboration within and between services (Read et al., 2007; Tuffrey-Wijne et al., 2008, 2016). It is thus important to have a good understanding of how nurses from a range of backgrounds, and working across a range of settings, are currently involved in delivering palliative and end-of-life care for people with intellectual disability. In this paper, we therefore seek to begin to increase our understanding by addressing the question: ‘What are the levels of support provided by nurses in the last months of life for people with intellectual disability?’ To determine this, retrospective data were obtained on the support provided to people with intellectual disability who, up to the time of their deaths, had been living in intellectual disability services. The study from which the data were obtained had broader objectives concerning the care of people with intellectual disabilities at end of life, but for the most part here we focus largely on the support provided by nurses at this time.

Methods

Figure 1 provides an overview of the study design.

Figure 1.

Flow diagram of methodology.

Participating services

Participating services were from the independent sector across the UK and comprised either social care residential settings (supported living or registered care homes) or nursing care homes that were exclusively for people with intellectual disability. Within nursing care settings registered nurses are employed alongside other care staff to ensure that residents have access to 24-hour nursing care.

The wider study from which data for this paper were taken was powered to obtain data on deaths in services supporting 11,000 people in the UK. To allow for potential drop-out or non-response in different phases of the study, the study was designed to run over 18 months. Potential service providers were identified through several routes, including the knowledge of the collaborators, consultations with commissioners and via different professional networks. Of 80 service providers contacted, 38 (47.5%) agreed to participate. These services were asked to provide details on the age and gender of the population of people with intellectual disability who were supported only in settings that were exclusively for people with intellectual disability. These 38 service providers supported 13,568 people with intellectual disability across the UK and returned data on deaths within this population. Only two of the providers did not provide details on the scale of their services in one or other of the four countries of the UK. Data from the other 36 service providers indicated that they supported 12,804 people in 3080 care settings. The majority lived in England (n = 10,463; 81.7%), 8.9% (n = 1140) in Wales, 7.6% (n = 969) in Scotland and 1.8% (n = 232) in Northern Ireland.

Initially the aim was only to obtain data for people living in social care provision. In UK terms, this implied supported living services or registered care homes. However, during the study, a small number of providers indicated that they also provided intellectual disability-exclusive nursing homes. These were opportunistically included in the study. There were more supported living services (2508; 81.4%), than registered care home settings (546; 17.7%) or nursing care (26; 0.8%). While there is confidence in the representativeness of social care settings, the opportunistic sampling of nursing homes implies these settings may be non-representative. However, they are included here given our focus on nursing and as within nursing homes there is 24-hour support overseen by nurses. In contrast, social care settings may receive visits from nursing staff, but generally support is provided by social care staff.

Procedure and materials

The study was split into three phases (see Figure 1). Phase 1 was designed to collect data, which would allow the number of people living in various settings to be reported so that age and gender-specific death rates within this population could be established. Service managers were asked to provide data on the number of people the service provided support to on a census day (1 November 2013). In addition, they provided information on the geographical areas of the UK where settings were located. A total of 36 of the 38 providers supplied these data.

In phase 2, all 38 service providers were asked to identify the number of deaths of residents occurring over an 18-month period in 3 6-monthly waves of data collection (1 July to 31 December 2013, 1 January to 30 June 2014 and 1 July to 31 December 2014). For each death identified, they also completed a core data questionnaire that included the age at time of death, gender, health conditions, cause and place of death, and the level of hospital admissions in the 6 months prior to death. Over the 18-month time period, core data were obtained for 247 out of 248 deaths identified by service providers.

For each death identified, service providers were asked to provide the contact details of a member of staff who knew the deceased person. This member of staff was then sent a phase 3 questionnaire. This phase aimed to collect data on the perspectives of staff on the care the deceased received in the last months of their life. In England and Wales the annual National Survey of Bereaved People collects nationally representative data to monitor the end-of-life care service user perspective. With death certificates as the sampling frame, the national survey uses the Views Of Informal Carers Evaluation of Services – short form (VOICES–SF) questionnaire to explore experiences of care in the last 3 months of life (Hunt et al., 2013). In this study, data were gathered using a modified VOICES questionnaire (Hunt et al., 2013) and a supplementary questionnaire. VOICES is usually completed by family members but is sometimes completed by care staff. In this study it was modified, with approval from the VOICES team, to ensure that it was relevant to paid carers in intellectual disability services. The modifications were made to ensure that it was sensitive to intellectual disability care settings. For instance, it was made clear that home meant the usual place of residence of the decedent as opposed to, for example, the family home. Reference was also made to the provision of learning disability nurses, a distinctly qualified branch of nursing. These modifications were minor and thus were unlikely to affect the comparability of findings from other VOICES surveys. Data collected in this phase included information on the care provided by services, the support available for staff and the expectedness of death. While many of the questions were fixed response, there was also the opportunity for additional comments to be made. It was not possible to send phase 3 questionnaires for 32 deaths identified at phase 2 for a variety of reasons, including that staff teams had disbanded, phase 2 data were reported too late for inclusion in phase 3, deaths were under investigation by a coroner, or no contact details for phase 3 were provided. However, a total of 215 phase 3 questionnaires were sent, of which 178 were returned. Thus there was a return rate of 82.8% questionnaires. Phase 3 data were then obtained for 72.1% of all deaths identified in phase 2. The overwhelming majority of respondents in phase 3 were frontline care staff or managers who worked in the setting (94.8%). The remainder (5.2%) were managers of the staff team who worked with the individual with intellectual disabilities but did not work exclusively within the setting where the decedent had lived.

Data analysis

Quantitative data were entered into SPSSX to facilitate analysis, and data entry was cross-checked to ensure reliability. Within this paper only descriptive statistics are used for reporting purposes. Qualitative data from the free text section of the survey were cut and pasted into a Word file and only those referring to nursing support are included in this paper.

Results

The study reported here primarily sought to gather data regarding the deaths of people with intellectual disability (n = 222) who, regardless of place of death, had been supported up to the time of their deaths in social care settings. However, data were also obtained on 25 decedents who had been living in intellectual disability nursing homes and these data have been included in this paper given its focus on nursing support. Comparative data, however, need to be interpreted with caution because the numbers in the study living in nursing homes was very small and possibly non-representative. Table 1 provides information regarding the age and gender profile of the 247 deceased persons included in the study by place of residence. The majority of deaths reported in this study (n = 128) occurred between the ages of 50 and 69 years, although 2 occurred under the age of 20 years and 6 were aged 90 + years. Decedents living in nursing homes were younger (mean 54.6 years) than those living in social care settings (54.6 years) (t = 2.26, p < 0.05).

Table 1.

Demographic characteristics of deceased persons with intellectual disabilities by usual place of residence.

	Social care setting	Nursing home for people with intellectual disabilities	Missing	Total
Place of residence	208	25	14	247
Gender
Male	124	6	2	132
Female	84	19	2	105
Missing			10	10
Age (years)
Under 20	2	0	0	2
20–29	2	5	0	7
30–39	6	1	0	7
40–49	30	2	1	33
50–59	52	8	2	62
60–69	62	3	1	66
70–79	32	1	1	34
80–89	16	5	0	21
90+	6	0	0	6
Missing	0	0	9	9

Table 2 indicates the extent to which those who died had co-existing conditions that will have impacted on their support needs. The most commonly reported condition was epilepsy (n = 79), but 70 individuals were also identified has having challenging behaviour. These levels are broadly comparable to those reported in other studies (see e.g. Heslop et al., 2013).

Table 2.

Additional conditions experienced by deceased persons with intellectual disabilities by place of residence.

	Social care setting (n = 208)	Nursing home for people with intellectual disabilities (n = 25)	Type of setting not identified (n = 14)
Diabetes
Yes	17	3	0
No	179	20	1
Don’t know	1	1	0
Missing	11	1	13
Epilepsy
Yes	79	15	0
No	118	10	1
Don’t know	1	0	0
Missing	10	0	13
Down’s syndrome
Yes	45	4	0
No	152	20	2
Missing	11	1	12
Autism
Yes	17	2	1
No	176	22	1
Don’t know	5	0	0
Missing	10	1	12
Challenging behaviour
Yes	70	5	1
No	129	18	0
Don’t know	0	1	0
Missing	9	1	13

Table 3 provides information regarding the coded perceived cause of death (when known) and indicates that the most common reported causes relate to respiratory disorders either due to aspiration pneumonia/choking (n = 21) or to other respiratory disorders (n = 70). Only 46 deaths were from cancer or dementia, the conditions most associated with the need for end-of-life care.

Table 3.

Coded exact cause of death by place of residence.

	Social care settings	Nursing home for people with intellectual disabilities	Missing	Total
Cancer	29	1	1	31
Dementia	14	1	0	15
Brain and nervous system (not dementia)	3	1	0	4
Aspiration/choking/pneumonia plus swallowing difficulties	19	2	0	21
Other respiratory disorder	57	11	2	70
Cardiac/cardiovascular	36	2	0	38
Gastrointestinal/liver	12	1	0	13
Renal/genito-urinary	5	1	0	6
Congenital life-limiting condition	2	0	0	2
Infectious disease	6	0	0	6
Don’t know	20	3	7	30
Natural causes/old age	3	2	0	5
Missing	2	0	4	6

Table 4 provides information on whether the individual died in their usual place of residence. While 48.9% (n = 112) died in the setting in which they lived, death was more common in nursing homes (64%, n = 16) compared to 47% (n = 95) in social care settings.

Table 4.

Did the deceased die at their usual place of residence?

	Social care settings	Nursing home for people with intellectual disabilities	Missing	Total
Did the deceased die at their usual place of residence?
Yes	95	16	1	112
No	108	9	0	117
Missing	5	0	13	18
Total	208	25	14	247

For individuals who were reported not to have died suddenly (n = 145), data were obtained on the support they had received from a variety of different professionals. Only 19 individuals were reported not to have had support from outside services. Table 5 describes the numbers of decedents who have contact with different types of nurses. The most frequent contact was with community or district nurses (n = 88). When individuals were identified as receiving support from only one type of nurse this related to district nurses (n = 24), intellectual disability nurses (n = 15), Macmillan nurses (n = 1) and other nurses (n = 5). The most frequently reported (n = 35) combination of nursing support was district/community nurses combined with intellectual disability nurses, and one individual was reported as receiving support from all five types of nurses. In four instances district/community nursing support was provided to those living in nursing homes, which might be considered unusual given that 24-hour nursing support was available in such settings. However, these were intellectual disability-specific nursing homes and therefore may have been staffed by intellectual disability nurses rather than those from a general nursing background. Altogether, 70 individuals, of whom 12 were living in nursing homes, received support from intellectual disability nurses, suggesting that in the other 58 instances such nurses may have been providing specialist intellectual disability support, sometimes in collaboration with other nurses.

Table 5.

Contact with nursing services during the final 3 months of life by place of residence for decedents who did not die suddenly (n = 145).

	Social care settings	Nursing homes	Missing	Total
District or community nurses	82	4	2	88
Intellectual disability nurses	56	12	2	70
Macmillan nurses	27	3	1	31
Marie Curie nurses	6	0	0	6
Other nurses	7	5	0	12
No contact with any services	19	0	0	19
Don’t know	2	0	0	2
Missing	5	1	0	6

When respondents reported that the individual had seen district/community nurses during the last 3 months of life, data were obtained on the frequency and quality of care of such support. Responses are set out in Table 6 and indicate that 21 individuals received such support at least once a day. While information was not gathered regarding the nature of their interventions, it does nonetheless indicate that in a number of instances such nurses provide regular and frequent levels of support for individuals with intellectual disability living in social care settings at end of life, particularly given a further 21 individuals who received between 2 and 6 visits per week. That the staff team valued such is reflected by the finding that 77 participants rated the nursing care provided as either excellent or good compared to only 6 indicating that it was fair or poor.

Table 6.

Frequency and quality of district and community nursing support when provided (n = 88).

	Social care settings	Nursing home for people with intellectual disabilities	Missing	Total
How often did the district/ community nurse visit?
More than once a day	12	0	0	12
Every day	9	0	0	9
2–6 times a week	21	0	0	21
Once a week	9	1	1	11
2–3 times a month	14	0	1	15
Less often	11	2	0	13
Don’t know	1	0	0	1
Missing	5	1	0	6
How do you feel about the care the individual received in the last 3 months of life from district/community nurses?
Excellent	48	0	1	49
Good	25	3	0	28
Fair	3	0	0	3
Poor	2	0	1	3
Missing	4	1	0	5

Some respondents made specific additional comments relating to care and support provided by district/community nurses:

The support given by the GP and district nurses were excellent.

The district nurses came to administer pain relief when needed and were prompt in doing this every time when called.

A lack of understanding from the district nurse team around X’s learning disability was poor and how this impacted on certain decisions being made such as dietary needs and fluid intake.

A total of 91 of the individuals whose deaths are reported in the current study were admitted to hospital in their last 3 months of life; during such admissions, nurses working within such settings would have played a key role in the assessment of need and the planning and delivery of care. Respondents were asked to rate the extent to which these individuals were treated with respect by nursing staff and the overall quality of nursing care received. These responses are set out in Table 7.

Table 7.

Hospital admission and quality of nursing care.

	Social care settings	Nursing home for people with intellectual disabilities	Missing	Total
Did the individual stay in hospital during their last 3 months of life?
Yes	82	8	1	91
No	44	8	1	53
Not applicable	27	3	0	30
Missing	3	1	0	4
In the last hospital admission how much of the time was he/she treated with respect by nurses?
Always	35	5	0	40
Most of the time	25	2	1	28
Some of the time	15	0	0	16
Don’t know	7	0	0	7
Not applicable	72	10	1	83
Missing	2	2	0	4
How do you feel the care was that he/she received from the nurses during that admission?
Excellent
Good	23	3	0	26
Fair	34	6	1	41
Poor	16	0	0	16
Don’t know	4	0	0	4
Not applicable	3	0	0	3
Missing	72	10	1	83

It is positive to note that in 67 instances the nursing care received was rated as being either excellent or good. However, a further 20, and only those working in social care settings, rated it as either fair or poor. It is also positive to note that 68 participants in this study reported that nurses always or most of the time treated individuals with dignity and respect. Nonetheless, it is important to note that 16 reported that this only happened some of the time. Additional comments provided by respondents reflected both positive and negative experiences of nursing care:

At hospital, the nurses were excellent and would regularly call to ask questions. They did struggle with his personal care at times though we were happy to help.

Nurses didn’t listen to what X was saying, he was ignored and dismissed his distress as being awkward, they didn’t have the patience to deal with him in the way his learning disability required. Thus, making the job harder and X’s distress more profound.

In addition, a number of comments indicated that breakdowns in communication with care-setting staff and between professionals occurred:

The lack of communication between the health professionals was very poor, they never seemed to know what each department was doing.

The lack of communication to his usual carers was poor.

Strengths and weaknesses

This paper has reported retrospective data on the last months of life of a largely representative sample of people with intellectual disabilities across the UK and using a recognised measure of care at end of life. Every region of the UK had a care setting that was managed by the participating services. In addition, response rates were excellent. Core data were obtained for 247 deaths of the 248 (99.6%) identified by service providers and follow-up data were obtained for 178 (72.1%). These are considerable strengths and are important given the lack of such data concerning this population. However, there are important limitations to address before we discuss the study’s findings. As highlighted above, we cannot, given the opportunistic inclusion of nursing homes for people with intellectual disability, determine the generalisability of findings for this sector. Furthermore, only a small number of nursing home settings were included. The key aim of the study was to obtain such data for people living in social care settings for those with intellectual disabilities, given their important role in supporting adults with intellectual disabilities. In England alone, Emerson et al. (2012b) reported that 58,480 people with intellectual disabilities were being supported in such settings in 2011 compared to 1290 people living in registered nursing homes. These, then, are settings where many people with intellectual disabilities will live and die, and are therefore key providers of care at the end of the lives of many people with intellectual disabilities. However, no data were obtained for people with intellectual disabilities who had been living with families, living in non-intellectual disability services or living independently. The reported average age and causes of death were similar to those reported in studies of the wider population of adults with intellectual disabilities (Glover et al., 2017; Heslop et al., 2013). However, the distinct needs and circumstances of those living in other situations at the end of their lives and the extent to which they are supported by nurses or other health professionals remain important areas for future research.

Discussion

Glover et al. (2017) identified that people with intellectual disabilities had an expected life expectancy at birth 19.7 years lower than the general population. Consistent with this, in the present study most of the recorded deaths occurred among those who are middle aged. The findings also suggest other differences from the wider population. For example, people with intellectual disability may have specific comorbidities such as challenging behaviours, which may significantly impact on their care and support needs and (sometimes) mask symptoms (Tuffrey-Wijne et al., 2016). The importance of recognising ‘unconventional’ ways of expressing pain is therefore essential (Tuffrey-Wijne et al., 2016), but if nurses are unaware of specific assessment tools for use with people with intellectual disability (Cooper et al., 2014) then, for example, pain may be missed and distress increased.

The most commonly coded reported cause of death in this study related to respiratory disorders (including aspiration, choking and pneumonia). Respiratory disease along with circulatory disease and neoplasms were the most common causes of death among people with intellectual disabilities in the study undertaken by Glover et al. (2017), which differs from the wider population in which the leading causes of death are cancer, cardiac and dementia related (Public Health England, 2015).

The issue of avoidable deaths (Glover et al., 2017) also needs to be acknowledged, and nurses have a responsibility to work with others to reduce the potential for aspiration and choking. Such differences compared to the wider population may suggest that it is difficult to determine when an individual with intellectual disability needs end-of-life care (Heslop et al., 2013), with consequent implications for the provision of appropriate care to the individual, for staff from the care setting and indeed for the nurses providing care. There is, perhaps, a need to examine the difficulties in determining when end-of-life care is necessary within this population. Related to this is the place of death. While in this study 47% of those in social care settings died in their usual place of residence, this figure rose to 64% in nursing homes. The latter figure is comparable to wider research that reviewed deaths in non-intellectual disability-specific residential care homes, which reported that 64% of deaths of their residents occurred within such settings (Kinley et al., 2017). However, more research is needed to determine whether the unexpectedness of death is linked to fewer deaths in the settings in which people lived and the resources required to support more people with intellectual disability to die in the setting in which they live.

The findings of this study show the high-profile role that nurses play in supporting people with intellectual disability in the last months of their lives across community and hospital settings. Some living within intellectual disability-specific nursing homes received additional support from district/community nurses despite having 24-hour nursing care. This may reflect reports that intellectual disability nurses generally feel that they lack specific knowledge relating to end-of-life care (Baily et al., 2014), and explains the input from district/community nurses within nursing home settings. Indeed, support from more than one type of nurse was evident in a number of instances, with the most common combination of nursing support being district/community nurses and intellectual disability nurses. Here it is likely that intellectual disability nurses would be providing specific support relating to intellectual disability, this having been identified as a knowledge and experience deficit among other nurses (Baily et al., 2014). A number of other studies have identified the need for intellectual disability and end-of-life services to work together to ensure that the required range of knowledge and skills are in place to meet the needs of people with intellectual disability at end of life (Baily et al., 2014; Bekkema et al., 2014; Tuffrey-Wijne et al., 2016). The findings of this study would appear to suggest that, in a number of instances, this is happening in practice.

While other studies indicate that district/community nurses are involved in providing support to people with intellectual disability at the end of their lives (Baily et al., 2014), they do not provide information regarding the frequency of such support or of its perceived quality. This study has shown that not only are district/community nurses involved in providing regular support for people with intellectual disability at end of life, but also that, in most instances, the quality of the care was rated positively. However, the current study did not explore the nature of nursing support provided and this could be a useful focus of future research.

The adequacy of care received by people with intellectual disability in hospital settings has been questioned, and institutional discrimination has been highlighted as a contributory factor (Iacano et al., 2014). In this study hospital-based nursing care was generally rated positively and individuals were treated with dignity and respect most or all of the time. Nonetheless, it also needs to be acknowledged that in almost a quarter of instances care was rated as less than good, and in about a fifth that people with intellectual disability were not treated with dignity and respect at least most of the time. Given that treating people with dignity and respect is a core principle of end-of-life care (National End of Life Programme, 2011), there is therefore need for improvement, and more so if excellence is the standard to aspire to.

This study demonstrates that nurses with different backgrounds and working in a range of settings were involved in caring for people with intellectual disability in the last 3 months of their lives. However, the population they may be working with is more likely to be younger, to die from different causes, to die more unexpectedly and have comorbidities, including behaviours that challenge, than the general population. In addition, nurses may need to work in collaboration with nurses from other specialist backgrounds as well with social care staff. These factors have implications for both nursing practice and education.

Knowledge of, and experience in, both end-of-life care and the needs of people with intellectual disability are needed to provide quality care at end of life. An understanding of best practice in end-of-life care is required, but this needs to be accompanied by an awareness of the particular pattern of deaths in people with intellectual disability and an understanding of adjustments to care provision that may be needed to ensure that their needs are met. However, the literature has suggested that nurses may feel that they lack one or other of these elements. One way forward might be to increase opportunities for shared learning for nurses from a range of backgrounds focused on the end-of-life needs of people with intellectual disability. This would also provide a forum within which to explore how effective joint working can be translated into practice.

The planned introduction of new standards for pre-registration nurse education in the UK (Nursing and Midwifery Council, 2017), with their focus on generic outcomes for all fields of nursing practice, care across the lifespan and care across settings and client groups, provides an opportunity to begin to address this issue. However, the extent to which this opportunity is translated into practice will require careful monitoring because elsewhere generic nursing curricula have meant that the needs of people with intellectual disability are often absent (Troller et al., 2016). Furthermore, such changes are UK based and focus only on pre-registration nursing; there is a need for shared learning opportunities at a post-qualifying level to address the needs of practising nurses. Finally, there is a need for discussion, development and review of curricula at an international level to ensure that all nurses are adequately prepared to fulfil their fundamental role in providing high-quality end-of-life care to all citizens (International Council of Nurses, 2012), including those who have intellectual disability. This needs to be supported and informed by appropriate research, policies and practice development.

Conclusion

This study indicates that both community and hospital-based nurses are involved in the care of people with intellectual disability during their end-of-life period, and that such care is generally rated in a positive manner. However, areas for improvement are also evident. It is argued that in order to effect change all nurses need to be provided with appropriate educational preparation to ensure that they are able to provide high-quality care for this group of people. This in turn requires that professional and health policy frameworks support such development, and that research is undertaken to determine the impact of any changes to such frameworks on the provision of nursing support for people with intellectual disabilities during their last months of life. Furthermore, given that the inequalities in health experienced by people with intellectual disability are evident internationally, the nursing profession needs to work at an international level to address this important agenda. This should include the development of international, cross-national nursing research focused on the health of people with intellectual disabilities.

Key points for policy, practice and/or research

• Previous research suggests that people with intellectual disability may experience premature and unexpected deaths and that end-of-life care can be poorly coordinated.

• During their last months of life many have contact with either community or hospital-based nurses.

• Nurses have the potential to make a significant impact on improving care at end of life for people with intellectual disability.

• To realise this potential, educational development is required to ensure that all nurses feel confident and competent in fulfilling this role.

Biography

Ruth Northway is Professor of Learning Disability Nursing and Head of Research in the Faculty of Life Sciences and Education at the University of South Wales. She is Chair of the RCN Research Society and Editor of the Journal of Intellectual Disabilities.

Stuart Todd is a Reader in Intellectual Disability Research. His research interests lie in the relationship between intellectual disability and death, dying and bereavement. In particular, he has an interest in quality-of-care outcomes and their determinants at the end of life for this population.

Katherine Hunt is Senior Research Fellow within Health Sciences at the University of Southampton. She has research interests in end-of-life care for older people, multiple morbidity and the burden of treatment. She has a particular interest in end-of-life care for vulnerable adults and easily overlooked groups.

Paula Hopes is an RNLD and Senior Lecturer (Learning Disabilities). Her interests are children with learning disabilities with behaviours that challenge. She is also interested in co-production and involving people with learning disabilities in recruitment, teaching and assessment.

Rachel Morgan is an RNLD currently Specialist Lead (Learning Disabilities) at the University of South Wales. She is a nurse academic with a special interest in the health needs of people with learning disabilities. Clinical background in community nursing, specialist services for younger people with dementia and health-liaison nursing.

Julia Shearn has had a longstanding involvement in learning disability research. She was one of the Research Assistants involved with the study. She is also a BACP accredited counsellor and currently involved in counselling parents of children with disabilities.

Rhian Worth is a research Assistant at the University of South Wales and interested in end-of life-care research for people with learning disabilities and currently for older people with learning disabilities.

Jane Bernal is a retired psychiatrist in intellectual disabilities and an honorary fellow at the University of South Wales. She has a longstanding research interest in end of life and also participatory research concerning people with intellectual disabilities.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Baily Thomas Charitable Fund [Grant Number 2781/5354].

Ethics

This study was approved by the Faculty of Life Sciences and Education Ethics committee, University of South Wales [Reference Number: HESAS13ST04].