RESEARCH
End-of-life training for paid carers working with people with learning disabilities Mary Codling, Jane Knowles, Ann Vevers
Mary Codling is a Primary Health Care Lead Nurse for Learning Disabilities, Berkshire Healthcare NHS Foundation Trust; Jane Knowles is Assistant Team Manager with Bracknell Community Team for People with Learning Disabilities; Ann Vevers is Community Nurse with Bracknell Community Team for People with Learning Disabilities
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n recent years, there has been a significant number of premature deaths in people with learning disabilities. This worrying trend was highlighted by Mencap’s Death by Indifference report (Mencap, 2007). Consequently, the Government funded a confidential inquiry into premature deaths in people with learning disabilities (Heslop et al, 2013), with the aim of developing guidance to help prevent people with learning disabilities dying prematurely. A key recommendation from the study (Heslop et al, 2013) suggests there should be better partnership between learning disability services and palliative care.
Background In the case of Berkshire Healthcare NHS Foundation Trust, this work was already in progress following the formation of an end-of-life working group across the county. The working group had representation from learning disability nurses, and Macmillan and Sue Ryder Care staff. The key objective of the working group was to inform and benchmark a local model of care that would enable people with learning disabilities, their families, carers and professionals to access the most appropriate services when faced with
ABSTRACT
People with learning disabilities are living longer lives. Over the past few years, research has explored the needs of people with learning disabilities, their families and learning disability professionals in relation to end-of-life care and death. However, little is known about the needs of paid carers and their experience of end-of-life care. This article discusses the development, implementation and evaluation of a study day about end-of-life care that was delivered to paid carers on two separate occasions in Berkshire Healthcare NHS Foundation Trust. A total of 43 paid carers attended and the days were well evaluated. The need for further training for paid carers who work with people with learning disabilities at the end of life was highlighted.
KEY WORDS
w Learning disabilities w Paid carers w Consent w Capacity w End-of-life care
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Email: [email protected]
end-of-life care. One of the first tasks the group undertook was a scoping exercise to enhance its understanding of specialist services available to people with learning disabilities at the end of life and to identify perceived gaps in delivery of services. The gaps identified by the working group were based on anecdotal evidence from practice, such as: w Identifying the transition to end of life for a person with learning disability w The lack of a clear pathway of care w Lack of local user-friendly/easy-read information about dying and death w Reported fears and lack of knowledge of carers, specifically including family carers and paid carers w Partnership working with learning disability services, acute care and end-of-life care services w How and when to access specialist palliative care services, such as Macmillan, Sue Ryder and Marie Curie. Following the scoping exercise, the group developed an action plan that would aim to consult with all stakeholders such as paid carers, family carers and professionals. However, to begin with, it was agreed by the working group that paid carers should be targeted first, given the increasing number of residential homes for people with learning disabilities.
Definitions and frameworks used The definition of a paid carer is a paid helper who regularly looks after a sick, elderly or disabled person (Oxford English Dictionary, 2013). In this article, ‘paid carer’ refers to people employed in a non-professional role to support people with learning disabilities in their own homes, residential settings, and respite care or day services. This group is commonly referred to as paid carers, support workers or care workers. As with any exploratory work, a framework was required to track its progression. For the purpose of this work, we used the ‘Plan, Do and Review’ model (Tague, 2004) that clearly maps out the development, implementation and evaluation. The plan for gaining this evidence was to develop and deliver a study day for paid carers, to be delivered in
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RESEARCH
Literature According to Cardy (2005), the longevity of people with learning disabilities has risen even faster than that of the general population, noting that this population group has the same age-related diseases that afflict the rest of the population. The consequence of living longer is that many people with learning disabilities may outlive their parents and often require some form of care, e.g. supported living, residential care or nursing home care. Accordingly, a literature search was conducted to investigate the needs of paid carers working in these settings regarding end-of-life care for people with learning disabilities. Findings revealed that most of the literature surrounding the end-of-life care for people with learning disabilities focuses mainly on the experiences of people with learning disabilities, health professionals or family carers. For instance, Li and Ng (2008) identified areas of expertise and deficits in the knowledge of nurses caring for people with profound learning disabilities, while Duplock et al (2009) explored the views and attitudes of learning disability and palliative care professionals in caring for terminally ill people with learning disabilities. Ryan et al (2011) explored the emotional impact on staff of caring for an individual. For people with learning disabilities, much of the work centres on bereavement, breaking bad news and making decisions (Blackman, 2008; Boyden et al, 2009; Flynn et al, 2009; Campbell and Bell, 2010; Ryan et al, 2010; McEvoy et al, 2012; Ryan et al, 2012; Tuffrey-Wijne, 2012). Two studies in particular that investigated the perspectives of paid carers in supporting people with learning disabilities were Ryan et al (2011) and Wiese et al (2012), who found a number of common themes between the care issues and carers when looking after a person with learning disabilities, such as dealing with family, recognising and managing distress and pain, awareness of the feelings of other people with learning disabilities living in the setting where the person was being cared for, and lack of sufficient time to mourn alongside dealing with external services such as health and local authorities. In order to explore these interactions, Wiese et al (2012) developed a model to further explain the interactions of all partners involved in the care of a person with learning disability at end of life, that included the ‘knowledge of dying’, the ‘where of dying’, ‘the how of caring’ and the ‘post-death caring’. The model developed by Wiese et al (2012) mirrors the six steps of care (NHS National Endof-Life Care Programme, 2011) that framed the content of the two study days described in this paper. Other studies that have looked at paid carers have done so from the perspective of people with learning disabilities as users of services (Clarkson et al, 2009; Dodevska and Vassos, 2013).
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The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) (Heslop et al, 2013) and other studies (Mencap, 2007; Parliamentary and Health Service Ombudsman, 2009) found that family carers and paid carers are the people who know the person with learning disability best. Yet they are not always listened to and often find it difficult to challenge medical professionals. Equally, Cross et al (2012) found a lack of understanding between palliative care staff and learning disability staff. Further developments in recognising carers’ needs have emerged from the European Association for Palliative Care (EAPC). It forwarded a white paper (2009) that can be used as a benchmark to set standards and norms for palliative care across Europe for the provision of care in all settings, inclusive of the needs of family carers, friends and anyone else involved in caring for an individual at the end of life.
Research gap Nonetheless, Payne (2010) notes that despite the emergence of guidance and literature surrounding the services available to improve the needs of carers, few are supported by rigorous research. The gap identified from the literature surrounding paid carers reiterated the action of the working group: that paid carers should be the first group to deliver training about end of life when caring for people with learning disabilities. Training for paid carers is essential, given that the majority of people with a learning disability would need some form of care, whether in a residential setting, their parents’ home or in their own accommodation with supported care. According to McEnhill (2013), many people with learning disabilities live in social care settings where paid carers have no professional training to recognise the early signs of ill-health that would enable them to be prepared before it reaches the palliative stage. Although the majority of deaths still occur in hospital or institutional settings, the standard choice in end-of-life care has always been ‘at home’ (Saunders, 2010). Evidence to substantiate this is derived from Gomes et al (2011), who found that, on average, home deaths in England and Wales have increased from 18.3% in 2004 to 20.8% in 2010. The CIPOLD study (Heslop, 2013) showed that more than double that percentage of people with learning disabilities died in a residential care setting. A growing number of people with learning disabilities live independently in their own homes, which McEnhill (2013) suggests makes them vulnerable to being moved against their wishes if they develop a terminal illness. The fact that much research surrounding end-of-life care for people with learning disabilities has explored professionals’ views, the views of people with learning disabilities and that of family carers demonstrates that there is limited evidence of the needs of paid carers or support staff within care settings for people with learning disabilities at the end of life. The gap identified provides further evidence to support the development and implementation of a study day for paid carers.
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two settings across the county. The rationale for choosing a study day was that the findings from the evaluation could be cross-referenced with the evidence emerging from the working group about the delivery of end-of-life care for people with learning disabilities.
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TOPIC HEADER RESEARCH
Step 1
Step 2
Discussions as the end of life approaches
Assessment care planning and review
• Open, honest communication • Identifying triggers for discussion
• Agreed care plan and regular review of needs and preferences • Assessing needs of carers
Step 4
Step 3 Coordination of care • Strategic coordination • Coordination of individual patient care • Rapid response services
Delivery of highquality services in different settings • High-quality care provisions in all settings • Acute community care homes, extra care housing hospices, community hospitals, prisons, secure hospitals and hostels • Ambulance services
Step 5
Step 6
Care in the last days of life
Care after death
• Identification of the • Recognition that end-ofdying phase life care does not stop at the point of death • Review of needs and preferences for place • Timely verification and of death certification of death or referral to coroner • Support for both patient and carer • Care and support of carer and family, including • Recognition of wishes emotional and practical regarding resuscitation bereavement support and organ donation
Social care Spiritual care services Support for carers and families Information for patients and carers Figure 1. Six steps to care (NHS National End-of-Life Care Programme, 2011).
Aims of study The overall aim was to implement and evaluate a study day for paid carers on end-of-life care for people with learning disabilities in two different sites, i.e. one in east Berkshire and one in west Berkshire. The study day was developed to deliver information on: w End-of-life care and identification of this stage w Opportunities for paid carers to hear individuals with learning disabilities talk about their end-of-life wishes and to make advance care plans, while appreciating the challenges they may encounter w Local services available to support people with learning disabilities in end-of-life care and how they can be accessed w The impact of paid carers’ own beliefs, values and needs relating to death and dying w The physical, psychological, spiritual and social issues that may arise when caring for a dying person.
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Method The development and implementation of the study day was based on a structured framework known as the six steps of care (NHS National End-of-Life Care Programme, 2011) (Figure 1). The study day was delivered by a variety of professionals, including Sue Ryder staff, end-of-life care coordinators district nurses, learning disability nurses and Macmillan nurses. Paid carers were informed of the purpose of the day, i.e. that information and guidance about end-of-life care would be shared and used as a benchmark by the working group to explore some of the issues and barriers encountered in practice.The paid carers that attended the day came from a variety of settings, such as residential care homes, day centres, respite care centres and supported living settings.
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The total number of paid carers that attended was 43, of which 27 attended the session in the east of the county and 16 in the west. Of the 43 paid carers, 39 were female and 4 were male.
Content of study day Each session commenced with an introduction that included the demographics of people with learning disabilities, morbidity and mortality rates, alongside a definition of what learning disability is and what constitutes end-of-life care. The term ‘learning disabilities’ is often used interchangeably with ‘learning difficulties’; hence, the condition is not always fully understood. The Department of Health (DH), (2001) defined learning disability as:
‘A state of arrested or incomplete development of mind, which includes significant impairment of intelligence and social functioning that begins before adulthood with a lasting effect on development, as well as having a reduced ability to understand new or complex information or to cope independently.’ Although paid carers were working with individuals with learning disabilities, this definition enabled them to understand the context of diagnosis and some of the issues that it presents within practice. For example, the impact of a learning disability could mean that some people have difficulty communicating their needs, may lack knowledge or insight about their health, may be unable to express pain or may lack the capacity to make decisions or consent to treatment. For people with learning disabilities who have the capacity to consent, this capacity may also be impaired during end-of-life care, due to medical treatments. This prompted
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RESEARCH
Resources and documentation People at the end of life are defined as those who are likely to die within the next 12 months (Royal College of General Practitioners and the Royal College of Nursing, 2010). This definition prompted discussions surrounding degenerative health conditions among people with learning disabilities that led to the introduction of the Route to Success in End-of-Life Care: Achieving Quality for People with Learning Disabilities (NHS National End-of-Life Care Programme, 2011). It provides guidance in six steps to caring for a person at the end of life (see Figure 1). Often people see the end of life as the only stage, but the stages leading up to death are equally important. The contents of the training days were therefore mapped on the six steps set out in Route to Success in End-of-Life Care that would enable them to understand the process and provide future guidance in their roles as paid carers for people with learning disabilities at the end-of-life care. A short film, We are Living Well but Dying Matters (CHANGE, 2011), was shown. In this film, people with learning disabilities described their understanding of death. Following the film, a person with learning disabilities talked about her knowledge of death and shared her thoughts
Table 1. Barriers and solutions in delivering end-of-life care Barriers
Solutions
Views of people with learning Person-centred care/end-of-life plans disability differ from parents Opportunities to talk Supervision about death Recognising and treating pain Assessment tools Too many professionals /do not understand the roles
Training/guidance about services to access
Box 1. Skills identified Compassion Respect Empathy Courage Caring Listening Patience Understanding
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Diplomacy Verbal skills Humour Problem solving Team player Signposting Relationships Communication
Co-coordinating Financial Medication Research (internet) Experience of caring Recording Risk analysis Flexible
about what she would like to happen at the end of life. Paid carers were then given time to reflect on both the film and the presentation from a person with a learning disability and were invited to share thoughts and feelings that may mirror issues that have emerged in their practice. Throughout the session, time was time allocated for paid carers’ responses, which were documented on flipcharts. A district nurse and a palliative care nurse delivered a session on care in the last days of life through the use of a pseudo case study of a person with learning disabilities living in a residential home. The delivery of a case study prompted paid carers to discuss some of the issues they encounter in practice, such as the recognition of the symptoms of pain. Paid carers were informed about an assessment tool called DisDat (Regnard et al, 2003) that could be used in practice to identify when an individual is distressed and to monitor changes in behaviour that could indicate when someone is in distress. A copy of DisDat was provided for all paid carers in their course folder. The district nurse and the palliative care nurse demonstrated how the needs and wishes of an individual with learning disabilities could be documented using a one-page profile whereby essential information and the wishes of the individual could be sought at the end of life. Advanced care planning is important to ensure that people with learning disabilities and their families are aware of services available and of their right to have equal access to these services in the same way as the rest of the population. Recent guidance on hospice care (McEnhill, 2013) was also made available on the study days. At the end of the study day, paid carers were given an evaluation form to complete and were requested to rate the day and how it would influence their practice.
Outcomes Summaries from the flipcharts in the study day were collated (with paid carers’ permission) into the following categories: w Barriers and solutions to delivering end-of-life care (see Table 1) w Skills identified (see Box 1) At the end of the study day, paid carers completed an evaluation form. In total, 43 forms were completed, with 27 from the first session and 16 from the second session (see Table 2 and Table 3). The paid carers were asked to rate the study day from ‘Excellent’ to ‘Very poor’, as well as identifying three changes that they would make to practice (see Box 2). Paid carers were also invited to add comments to the evaluation sheet (see Box 3). As evidenced in the following discussion, comparing the comments from the evaluation forms with the barriers and solutions identified earlier in the day shows that paid carers had a better knowledge and increased awareness about end-of-life care following the study day.
Discussion During the study day, paid carers shared some of the barriers they encountered when caring for a person with learning disabilities at end of life; they reported they were
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much discussion among paid carers about consent and highlighted the need for all services to be knowledgeable about the Mental Capacity Act (DH, 2005) and adhering to the principles in determining whether an individual has the capacity to consent. Where capacity is in question, then discussions between all involved in the care would need to take place to ensure the person with a learning disability’s needs are met. Equally, the subject of capacity and consent prompted discussion about the needs and wishes of people with learning disabilities while they are well and not waiting until they lack capacity or in end-of-life care.
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TOPIC HEADER RESEARCH not adequately prepared to meet this need. A number of issues emerging from the flipchart summaries appeared to heighten their inadequacy, such as their fears in communicating with a person with learning disabilities about end of life, when to do this and the role of the family. Other areas identified were: recognising pain, managing pain and who to contact. This is consistent with findings from previous research (Ryan et al, 2011; Wiese et al, 2012). However, one of the strengths arising from the study day is that paid carers demonstrated through the evaluation that they had addressed their fears and concerns and gained a good understanding about end-of-life care that enhanced confidence. The paid carers acknowledged that they did have the skills that equip them to deliver compassionate and person-centred care (see Box 2). This finding is equally positive, as there is a widespread assumption that paid carers lack knowledge and skills, particularly in the light of recent poor practice, such as at Winterbourne View Hospital. Interestingly, there was no evidence from the flipchart summaries or the evaluation forms about hospice care. In contrast, paid carers’ views from the flipchart summaries showed they wanted people with learning disabilities receiving end-of-life care to die in their homes with familiar surroundings and with people they knew. It could also be argued that paid carers were not very familiar with hospice services prior to the study day.
Access to services Access to services was an area that prompted much interest. The talks from the district nurse and the palliative care nurse were viewed as very valuable as they enabled paid carers to gain an understanding of the services available and how to access them. Paid carers also identified the need for support in understanding the stages of grief and requested professional support to help them deal with their own grief and that of other residents they support. Notwithstanding, given the lack of recognition in the literature of the needs of paid carers, this study day provided further evidence of the wider implications for paid carers in delivering care to people with learning disabilities at end of life.
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Conclusion Training about end-of-life care for paid carers is essential if we are to provide a good death for people with learning disabilities. The study day provided a platform for delivering information about end-of-life care for paid carers. The findings from the study day both enabled and informed the working group about the need for ongoing training for paid carers in supporting people with learning disabilities at the end of life. The key message arising from this work is that paid carers need support and training from professionals who are at the forefront of care delivery. The information and guidance from the district nurse and palliative care nurse were valuable and highlighted the need for more joined-up discussions between all healthcare professionals involved in the delivery of care to people with learning disabilities at end of life, with the aim of developing a good plan of care to support paid carers.
British Journal of Community Nursing April 2014 Vol 19, No 4
Table 2. Evaluation of study day in the east of Berkshire Excellent Overall rating Relevance to your professional needs Effectiveness of trainer Pace of learning Refreshments and facilities Location and accessibility of venue Admin support
Good
Average
12 14
13 12
2 1
15
10
2
9 20
13 6
3 1
12
13
2
11
11
3
Poor
Very poor
Table 3. Evaluation of study day in the west of Berkshire Excellent Overall rating Relevance to your professional needs Effectiveness of trainer Pace of learning Refreshments and facilities Location and accessibility of venue Admin support
Good
Average
10 10
4 4
2 2
11
4
2
10 10
5 6
2
12
3
2
11
5
1
Poor
Very poor
1
There is a need to ensure that paid carers have this support if we are to transfer death from hospital settings to people’s own homes. The role of paid carers requires recognition, particularly in relation to their reliance on information and guidance for accessing care for people with learning disabilities at end-of-life care. We rely on paid carers to deliver good-quality care, and the evidence arising from the study day suggests that the solution is systems-based—that is, we need to provide seamless and joined-up care so that paid carers know when and how to access services and resources when caring for individuals with learning disabilities at the end of life. The findings from the study days will inform the working group of the need for further training for paid carers. Furthermore, they will enable community nurses who visit people with learning disabilities in these settings to ensure that they provide guidance to paid carers, both on the route to care and services available. BJCN A warm and special thank you to Liz Rankin (End-of-Life Facilitator and Education Coordinator) and Mandy Coombes (End-of-Life Care Education Facilitator for Sue Ryder) for
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Box 2. Changes in practice Review policies and procedures
Update paperwork Look into subject more
Have plans for end-of-life care
Get support for myself
Respect other people’s views about death
Discuss with staff team
Will alert other colleagues to the study day
Will use information and paperwork from study day in workplace
Will look into using one page profiles
Talk about death
Discuss the route to care with the staff team
Discuss feelings with staff about what to expect when end of life time comes
Will start to plan care
Be aware of other Now know what people’s feelings to do when someone dies, so will inform others
Box 3. Comments from evaluation sheets The importance of early detection of health issues and the role of the GP
Now know how to provide care for person at end of life
Awareness Will use course of diagnostic paperwork in my overshadowworkplace ing—behaviour of person is often aligned to learning disability
I now know who to contact
Better understanding of the roles of different professionals
Will ask for Will use one-page support for myself profile and will use easy-read information
all their help in planning and organising the study day. Acknowledgements also go to Shelagh Thompson (Macmillan Living Well Project Lead and Associate Macmillan Development Manager), Jennie Kilkenny (Clinical Nurse Specialist Palliative Care at Sue Ryder), Mim Winkworth (Clinical Nurse Specialist, Palliative Care) and Teresa Eckley (District Nurse, Berkshire Healthcare NHS Foundation Trust), who delivered presentations on the day. Their input, time and experience were invaluable. Blackman N (2008) The development of an assessment tool for the bereavement needs of people with learning disabilities. Br J Learning Disabilities 36: 165–70 Boyden P, Freeman A, Offen L (2009) Setting up and running a loss and bereavement support group for adults with learning disabilities. Br J Learning Disabilities
LEARNING POINTS
w People with learning disabilities are living longer and, as a consequence, will require some form of care from paid carers, whether in their own homes, from supported living or from residential care w Education and training about end-of-life care is required for paid carers who support people with learning disabilities w Better partnership between learning disability services and palliative care is required to provide good-quality care for people with learning disabilities at the end of life w Community nurses must ensure that paid carers are given guidance about accessing services when caring for an individual with learning disabilities at the end of life
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38: 35–40 Campbell A, Bell D (2010) ‘Sad, just sad’: a woman with a learning disability experiencing bereavement. Br J Learning Disabilities 39: 11–6 Cardy P (2005) Learning disability and palliative care. Int J Palliative Nurs 11(1): 14 CHANGE (2011) We are Living Well but Dying Matters. National Council for Palliative Care and the National End-of-Life Care Programme. CHANGE, London Clarkson R, Murphy GH, Coldwell JB, Dawson DL (2009) What characteristics do adults with intellectual disabilities value in direct support staff within residential forensic services? J Intellect Dev Disabil 34: 238–98 Cross H, Cameron M, Marsh S,Tuffrey-Wijne I (2012) Practical approaches towards improving end-of-life care for people with intellectual disabilities: effectiveness and sustainability. J Palliative Med 15(3): 322–6 Department of Health (2001) Valuing People: A New Strategy for People with Learning Disability for the 21st Century. http://tinyurl.com/q3zf545 (accessed 17 January 2014) Department of Health (2005) Mental Capacity Act 2005. www.legislation.gov.uk/ ukpga/2005/9/contents (accessed 25 March 2014) Dodevska GA,Vassos MV (2013) What qualities are valued in residential direct care workers from the perspective of people with an intellectual disability and managers of accommodation services? J Intellect Disabil Res 57(7): 601–15 Duplock L, Oliver D, Forrester-Jones R (2009) Improving care for patients with intellectual disabilities. Eur J Palliat Care 16(2): 66–8 European Association for Palliative Care (2009) White paper on standards and norms for hospice and palliative care in Europe: recommendations from the European Association for Palliative Care. Eur J Palliative Care 16(6): 278–89 Flynn M, Brown Salomons H, Burns Salomons S, Keywood, K (2009) The palliative care experiences of adults with learning disabilities/intellectual disability: the implications for ethical decision making. Int J Disability Human Dev 8(1): 25–32 Gomes B, Clanzani N, Higginson IJ (2011) Reverse of the British trends in place of death: time series analysis 2004–2010. Palliat Med 26(2): 102–7 Heslop P, Blair B, Fleming P, Hoghton M, Marriott A, Russ L (2013) Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD). University of Bristol/Department of Health. http://tinyurl.com/oklrx5r (accessed 25 March 2014) Li S, Ng J (2008) End-of-life care: nurses’ experiences in caring for dying patients with profound learning disabilities: a descriptive case study. Palliat Med 22(8): 949–55 McEnhill L (2013) Widening Access to Palliative Care for People with Learning Disabilities: Guidance and Resources for Professionals. http://tinyurl.com/p8b7k6v (accessed 17 January 2014) McEvoy J, McHale R, Tierney E (2012) Concept of death and perceptions of bereavement in adults with learning disabilities. J Intellect Disability Res 56(2): 191–203 Mencap (2007) Death by Indifference. http://tinyurl.com/nt48n4h (accessed 20 January 2014) NHS National End-of-Life Care Programme (2011) The Route to Success in End-ofLife Care: Achieving Quality for People with Learning Disabilities. http://tinyurl.com/ o7u3v3a (accessed 20 January 2014) Oxford English Dictionary (2013) Oxford English Dictionary. Oxford University Press, Oxford Parliamentary and Health Service Ombudsman (2009) Six Lives: The Provision of Public Services to People with Learning Disabilities. http://tinyurl.com/qzuga35 (accessed 20 January 2014) Payne S (2010) White Paper on improving support for family care. Part 2. Eur J Palliat Care 17(6): 286–90 Regnard C, Matthews D, Gibson L et al (2003) Difficulties in identifying distress and its causes in people with severe communication problems. Int J Palliat Nurs 9(3): 173–6 Royal College of General Practitioners and Royal College of Nursing (2012) Matters of Life and Death: Helping People to Live Well until they Die. http://tinyurl.com/ nqa6xfs (accessed 20 January 2014) Ryan K, Guerin S, Dodd P, McEvoy J (2010) Exploring the experiences of people with intellectual disabilities when service users die. Br J Learning Disabilities 39(4): 259–65 Ryan K, Guerin S, Dodd P, McEvoy J (2011) End-of-life care for people with intellectual disabilities: paid carers’ perspectives. J Appl Res Intellectual Disabilities 24(3): 199–207 Ryan J, McCarthy J, Graham M (2012) How clients cope with the death of a parent. Learning Disability Pract 15(4): 14–8 Saunders C (2010) End-of-Life Care Strategy: 2nd Annual Report. Department of Health. http://tinyurl.com/ozcerqj (accessed 20 January 2014) Tague NR (2004) The Quality Toolbox, 2nd edn. ASQ Quality Press, Milwaukee WI Tuffrey-Wijne I (2012) A new model for breaking bad news to people with intellectual disabilities. Palliat Med 27(1): 5–12 Wiese M, Stancliffe R, Balandin S et al (2012) End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services. J Appl Res Intellectual Disabilities 25(6): 571–83
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RESEARCH
British Journal of Community Nursing April 2014 Vol 19, No 4
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End-of-life training for paid carers working with people with learning disabilities Mary Codling, Jane Knowles, Ann Vevers
Mary Codling is a Primary Health Care Lead Nurse for Learning Disabilities, Berkshire Healthcare NHS Foundation Trust; Jane Knowles is Assistant Team Manager with Bracknell Community Team for People with Learning Disabilities; Ann Vevers is Community Nurse with Bracknell Community Team for People with Learning Disabilities
I
n recent years, there has been a significant number of premature deaths in people with learning disabilities. This worrying trend was highlighted by Mencap’s Death by Indifference report (Mencap, 2007). Consequently, the Government funded a confidential inquiry into premature deaths in people with learning disabilities (Heslop et al, 2013), with the aim of developing guidance to help prevent people with learning disabilities dying prematurely. A key recommendation from the study (Heslop et al, 2013) suggests there should be better partnership between learning disability services and palliative care.
Background In the case of Berkshire Healthcare NHS Foundation Trust, this work was already in progress following the formation of an end-of-life working group across the county. The working group had representation from learning disability nurses, and Macmillan and Sue Ryder Care staff. The key objective of the working group was to inform and benchmark a local model of care that would enable people with learning disabilities, their families, carers and professionals to access the most appropriate services when faced with
ABSTRACT
People with learning disabilities are living longer lives. Over the past few years, research has explored the needs of people with learning disabilities, their families and learning disability professionals in relation to end-of-life care and death. However, little is known about the needs of paid carers and their experience of end-of-life care. This article discusses the development, implementation and evaluation of a study day about end-of-life care that was delivered to paid carers on two separate occasions in Berkshire Healthcare NHS Foundation Trust. A total of 43 paid carers attended and the days were well evaluated. The need for further training for paid carers who work with people with learning disabilities at the end of life was highlighted.
KEY WORDS
w Learning disabilities w Paid carers w Consent w Capacity w End-of-life care
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Email: [email protected]
end-of-life care. One of the first tasks the group undertook was a scoping exercise to enhance its understanding of specialist services available to people with learning disabilities at the end of life and to identify perceived gaps in delivery of services. The gaps identified by the working group were based on anecdotal evidence from practice, such as: w Identifying the transition to end of life for a person with learning disability w The lack of a clear pathway of care w Lack of local user-friendly/easy-read information about dying and death w Reported fears and lack of knowledge of carers, specifically including family carers and paid carers w Partnership working with learning disability services, acute care and end-of-life care services w How and when to access specialist palliative care services, such as Macmillan, Sue Ryder and Marie Curie. Following the scoping exercise, the group developed an action plan that would aim to consult with all stakeholders such as paid carers, family carers and professionals. However, to begin with, it was agreed by the working group that paid carers should be targeted first, given the increasing number of residential homes for people with learning disabilities.
Definitions and frameworks used The definition of a paid carer is a paid helper who regularly looks after a sick, elderly or disabled person (Oxford English Dictionary, 2013). In this article, ‘paid carer’ refers to people employed in a non-professional role to support people with learning disabilities in their own homes, residential settings, and respite care or day services. This group is commonly referred to as paid carers, support workers or care workers. As with any exploratory work, a framework was required to track its progression. For the purpose of this work, we used the ‘Plan, Do and Review’ model (Tague, 2004) that clearly maps out the development, implementation and evaluation. The plan for gaining this evidence was to develop and deliver a study day for paid carers, to be delivered in
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RESEARCH
Literature According to Cardy (2005), the longevity of people with learning disabilities has risen even faster than that of the general population, noting that this population group has the same age-related diseases that afflict the rest of the population. The consequence of living longer is that many people with learning disabilities may outlive their parents and often require some form of care, e.g. supported living, residential care or nursing home care. Accordingly, a literature search was conducted to investigate the needs of paid carers working in these settings regarding end-of-life care for people with learning disabilities. Findings revealed that most of the literature surrounding the end-of-life care for people with learning disabilities focuses mainly on the experiences of people with learning disabilities, health professionals or family carers. For instance, Li and Ng (2008) identified areas of expertise and deficits in the knowledge of nurses caring for people with profound learning disabilities, while Duplock et al (2009) explored the views and attitudes of learning disability and palliative care professionals in caring for terminally ill people with learning disabilities. Ryan et al (2011) explored the emotional impact on staff of caring for an individual. For people with learning disabilities, much of the work centres on bereavement, breaking bad news and making decisions (Blackman, 2008; Boyden et al, 2009; Flynn et al, 2009; Campbell and Bell, 2010; Ryan et al, 2010; McEvoy et al, 2012; Ryan et al, 2012; Tuffrey-Wijne, 2012). Two studies in particular that investigated the perspectives of paid carers in supporting people with learning disabilities were Ryan et al (2011) and Wiese et al (2012), who found a number of common themes between the care issues and carers when looking after a person with learning disabilities, such as dealing with family, recognising and managing distress and pain, awareness of the feelings of other people with learning disabilities living in the setting where the person was being cared for, and lack of sufficient time to mourn alongside dealing with external services such as health and local authorities. In order to explore these interactions, Wiese et al (2012) developed a model to further explain the interactions of all partners involved in the care of a person with learning disability at end of life, that included the ‘knowledge of dying’, the ‘where of dying’, ‘the how of caring’ and the ‘post-death caring’. The model developed by Wiese et al (2012) mirrors the six steps of care (NHS National Endof-Life Care Programme, 2011) that framed the content of the two study days described in this paper. Other studies that have looked at paid carers have done so from the perspective of people with learning disabilities as users of services (Clarkson et al, 2009; Dodevska and Vassos, 2013).
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The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) (Heslop et al, 2013) and other studies (Mencap, 2007; Parliamentary and Health Service Ombudsman, 2009) found that family carers and paid carers are the people who know the person with learning disability best. Yet they are not always listened to and often find it difficult to challenge medical professionals. Equally, Cross et al (2012) found a lack of understanding between palliative care staff and learning disability staff. Further developments in recognising carers’ needs have emerged from the European Association for Palliative Care (EAPC). It forwarded a white paper (2009) that can be used as a benchmark to set standards and norms for palliative care across Europe for the provision of care in all settings, inclusive of the needs of family carers, friends and anyone else involved in caring for an individual at the end of life.
Research gap Nonetheless, Payne (2010) notes that despite the emergence of guidance and literature surrounding the services available to improve the needs of carers, few are supported by rigorous research. The gap identified from the literature surrounding paid carers reiterated the action of the working group: that paid carers should be the first group to deliver training about end of life when caring for people with learning disabilities. Training for paid carers is essential, given that the majority of people with a learning disability would need some form of care, whether in a residential setting, their parents’ home or in their own accommodation with supported care. According to McEnhill (2013), many people with learning disabilities live in social care settings where paid carers have no professional training to recognise the early signs of ill-health that would enable them to be prepared before it reaches the palliative stage. Although the majority of deaths still occur in hospital or institutional settings, the standard choice in end-of-life care has always been ‘at home’ (Saunders, 2010). Evidence to substantiate this is derived from Gomes et al (2011), who found that, on average, home deaths in England and Wales have increased from 18.3% in 2004 to 20.8% in 2010. The CIPOLD study (Heslop, 2013) showed that more than double that percentage of people with learning disabilities died in a residential care setting. A growing number of people with learning disabilities live independently in their own homes, which McEnhill (2013) suggests makes them vulnerable to being moved against their wishes if they develop a terminal illness. The fact that much research surrounding end-of-life care for people with learning disabilities has explored professionals’ views, the views of people with learning disabilities and that of family carers demonstrates that there is limited evidence of the needs of paid carers or support staff within care settings for people with learning disabilities at the end of life. The gap identified provides further evidence to support the development and implementation of a study day for paid carers.
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two settings across the county. The rationale for choosing a study day was that the findings from the evaluation could be cross-referenced with the evidence emerging from the working group about the delivery of end-of-life care for people with learning disabilities.
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TOPIC HEADER RESEARCH
Step 1
Step 2
Discussions as the end of life approaches
Assessment care planning and review
• Open, honest communication • Identifying triggers for discussion
• Agreed care plan and regular review of needs and preferences • Assessing needs of carers
Step 4
Step 3 Coordination of care • Strategic coordination • Coordination of individual patient care • Rapid response services
Delivery of highquality services in different settings • High-quality care provisions in all settings • Acute community care homes, extra care housing hospices, community hospitals, prisons, secure hospitals and hostels • Ambulance services
Step 5
Step 6
Care in the last days of life
Care after death
• Identification of the • Recognition that end-ofdying phase life care does not stop at the point of death • Review of needs and preferences for place • Timely verification and of death certification of death or referral to coroner • Support for both patient and carer • Care and support of carer and family, including • Recognition of wishes emotional and practical regarding resuscitation bereavement support and organ donation
Social care Spiritual care services Support for carers and families Information for patients and carers Figure 1. Six steps to care (NHS National End-of-Life Care Programme, 2011).
Aims of study The overall aim was to implement and evaluate a study day for paid carers on end-of-life care for people with learning disabilities in two different sites, i.e. one in east Berkshire and one in west Berkshire. The study day was developed to deliver information on: w End-of-life care and identification of this stage w Opportunities for paid carers to hear individuals with learning disabilities talk about their end-of-life wishes and to make advance care plans, while appreciating the challenges they may encounter w Local services available to support people with learning disabilities in end-of-life care and how they can be accessed w The impact of paid carers’ own beliefs, values and needs relating to death and dying w The physical, psychological, spiritual and social issues that may arise when caring for a dying person.
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Method The development and implementation of the study day was based on a structured framework known as the six steps of care (NHS National End-of-Life Care Programme, 2011) (Figure 1). The study day was delivered by a variety of professionals, including Sue Ryder staff, end-of-life care coordinators district nurses, learning disability nurses and Macmillan nurses. Paid carers were informed of the purpose of the day, i.e. that information and guidance about end-of-life care would be shared and used as a benchmark by the working group to explore some of the issues and barriers encountered in practice.The paid carers that attended the day came from a variety of settings, such as residential care homes, day centres, respite care centres and supported living settings.
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The total number of paid carers that attended was 43, of which 27 attended the session in the east of the county and 16 in the west. Of the 43 paid carers, 39 were female and 4 were male.
Content of study day Each session commenced with an introduction that included the demographics of people with learning disabilities, morbidity and mortality rates, alongside a definition of what learning disability is and what constitutes end-of-life care. The term ‘learning disabilities’ is often used interchangeably with ‘learning difficulties’; hence, the condition is not always fully understood. The Department of Health (DH), (2001) defined learning disability as:
‘A state of arrested or incomplete development of mind, which includes significant impairment of intelligence and social functioning that begins before adulthood with a lasting effect on development, as well as having a reduced ability to understand new or complex information or to cope independently.’ Although paid carers were working with individuals with learning disabilities, this definition enabled them to understand the context of diagnosis and some of the issues that it presents within practice. For example, the impact of a learning disability could mean that some people have difficulty communicating their needs, may lack knowledge or insight about their health, may be unable to express pain or may lack the capacity to make decisions or consent to treatment. For people with learning disabilities who have the capacity to consent, this capacity may also be impaired during end-of-life care, due to medical treatments. This prompted
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RESEARCH
Resources and documentation People at the end of life are defined as those who are likely to die within the next 12 months (Royal College of General Practitioners and the Royal College of Nursing, 2010). This definition prompted discussions surrounding degenerative health conditions among people with learning disabilities that led to the introduction of the Route to Success in End-of-Life Care: Achieving Quality for People with Learning Disabilities (NHS National End-of-Life Care Programme, 2011). It provides guidance in six steps to caring for a person at the end of life (see Figure 1). Often people see the end of life as the only stage, but the stages leading up to death are equally important. The contents of the training days were therefore mapped on the six steps set out in Route to Success in End-of-Life Care that would enable them to understand the process and provide future guidance in their roles as paid carers for people with learning disabilities at the end-of-life care. A short film, We are Living Well but Dying Matters (CHANGE, 2011), was shown. In this film, people with learning disabilities described their understanding of death. Following the film, a person with learning disabilities talked about her knowledge of death and shared her thoughts
Table 1. Barriers and solutions in delivering end-of-life care Barriers
Solutions
Views of people with learning Person-centred care/end-of-life plans disability differ from parents Opportunities to talk Supervision about death Recognising and treating pain Assessment tools Too many professionals /do not understand the roles
Training/guidance about services to access
Box 1. Skills identified Compassion Respect Empathy Courage Caring Listening Patience Understanding
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Diplomacy Verbal skills Humour Problem solving Team player Signposting Relationships Communication
Co-coordinating Financial Medication Research (internet) Experience of caring Recording Risk analysis Flexible
about what she would like to happen at the end of life. Paid carers were then given time to reflect on both the film and the presentation from a person with a learning disability and were invited to share thoughts and feelings that may mirror issues that have emerged in their practice. Throughout the session, time was time allocated for paid carers’ responses, which were documented on flipcharts. A district nurse and a palliative care nurse delivered a session on care in the last days of life through the use of a pseudo case study of a person with learning disabilities living in a residential home. The delivery of a case study prompted paid carers to discuss some of the issues they encounter in practice, such as the recognition of the symptoms of pain. Paid carers were informed about an assessment tool called DisDat (Regnard et al, 2003) that could be used in practice to identify when an individual is distressed and to monitor changes in behaviour that could indicate when someone is in distress. A copy of DisDat was provided for all paid carers in their course folder. The district nurse and the palliative care nurse demonstrated how the needs and wishes of an individual with learning disabilities could be documented using a one-page profile whereby essential information and the wishes of the individual could be sought at the end of life. Advanced care planning is important to ensure that people with learning disabilities and their families are aware of services available and of their right to have equal access to these services in the same way as the rest of the population. Recent guidance on hospice care (McEnhill, 2013) was also made available on the study days. At the end of the study day, paid carers were given an evaluation form to complete and were requested to rate the day and how it would influence their practice.
Outcomes Summaries from the flipcharts in the study day were collated (with paid carers’ permission) into the following categories: w Barriers and solutions to delivering end-of-life care (see Table 1) w Skills identified (see Box 1) At the end of the study day, paid carers completed an evaluation form. In total, 43 forms were completed, with 27 from the first session and 16 from the second session (see Table 2 and Table 3). The paid carers were asked to rate the study day from ‘Excellent’ to ‘Very poor’, as well as identifying three changes that they would make to practice (see Box 2). Paid carers were also invited to add comments to the evaluation sheet (see Box 3). As evidenced in the following discussion, comparing the comments from the evaluation forms with the barriers and solutions identified earlier in the day shows that paid carers had a better knowledge and increased awareness about end-of-life care following the study day.
Discussion During the study day, paid carers shared some of the barriers they encountered when caring for a person with learning disabilities at end of life; they reported they were
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much discussion among paid carers about consent and highlighted the need for all services to be knowledgeable about the Mental Capacity Act (DH, 2005) and adhering to the principles in determining whether an individual has the capacity to consent. Where capacity is in question, then discussions between all involved in the care would need to take place to ensure the person with a learning disability’s needs are met. Equally, the subject of capacity and consent prompted discussion about the needs and wishes of people with learning disabilities while they are well and not waiting until they lack capacity or in end-of-life care.
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TOPIC HEADER RESEARCH not adequately prepared to meet this need. A number of issues emerging from the flipchart summaries appeared to heighten their inadequacy, such as their fears in communicating with a person with learning disabilities about end of life, when to do this and the role of the family. Other areas identified were: recognising pain, managing pain and who to contact. This is consistent with findings from previous research (Ryan et al, 2011; Wiese et al, 2012). However, one of the strengths arising from the study day is that paid carers demonstrated through the evaluation that they had addressed their fears and concerns and gained a good understanding about end-of-life care that enhanced confidence. The paid carers acknowledged that they did have the skills that equip them to deliver compassionate and person-centred care (see Box 2). This finding is equally positive, as there is a widespread assumption that paid carers lack knowledge and skills, particularly in the light of recent poor practice, such as at Winterbourne View Hospital. Interestingly, there was no evidence from the flipchart summaries or the evaluation forms about hospice care. In contrast, paid carers’ views from the flipchart summaries showed they wanted people with learning disabilities receiving end-of-life care to die in their homes with familiar surroundings and with people they knew. It could also be argued that paid carers were not very familiar with hospice services prior to the study day.
Access to services Access to services was an area that prompted much interest. The talks from the district nurse and the palliative care nurse were viewed as very valuable as they enabled paid carers to gain an understanding of the services available and how to access them. Paid carers also identified the need for support in understanding the stages of grief and requested professional support to help them deal with their own grief and that of other residents they support. Notwithstanding, given the lack of recognition in the literature of the needs of paid carers, this study day provided further evidence of the wider implications for paid carers in delivering care to people with learning disabilities at end of life.
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Conclusion Training about end-of-life care for paid carers is essential if we are to provide a good death for people with learning disabilities. The study day provided a platform for delivering information about end-of-life care for paid carers. The findings from the study day both enabled and informed the working group about the need for ongoing training for paid carers in supporting people with learning disabilities at the end of life. The key message arising from this work is that paid carers need support and training from professionals who are at the forefront of care delivery. The information and guidance from the district nurse and palliative care nurse were valuable and highlighted the need for more joined-up discussions between all healthcare professionals involved in the delivery of care to people with learning disabilities at end of life, with the aim of developing a good plan of care to support paid carers.
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Table 2. Evaluation of study day in the east of Berkshire Excellent Overall rating Relevance to your professional needs Effectiveness of trainer Pace of learning Refreshments and facilities Location and accessibility of venue Admin support
Good
Average
12 14
13 12
2 1
15
10
2
9 20
13 6
3 1
12
13
2
11
11
3
Poor
Very poor
Table 3. Evaluation of study day in the west of Berkshire Excellent Overall rating Relevance to your professional needs Effectiveness of trainer Pace of learning Refreshments and facilities Location and accessibility of venue Admin support
Good
Average
10 10
4 4
2 2
11
4
2
10 10
5 6
2
12
3
2
11
5
1
Poor
Very poor
1
There is a need to ensure that paid carers have this support if we are to transfer death from hospital settings to people’s own homes. The role of paid carers requires recognition, particularly in relation to their reliance on information and guidance for accessing care for people with learning disabilities at end-of-life care. We rely on paid carers to deliver good-quality care, and the evidence arising from the study day suggests that the solution is systems-based—that is, we need to provide seamless and joined-up care so that paid carers know when and how to access services and resources when caring for individuals with learning disabilities at the end of life. The findings from the study days will inform the working group of the need for further training for paid carers. Furthermore, they will enable community nurses who visit people with learning disabilities in these settings to ensure that they provide guidance to paid carers, both on the route to care and services available. BJCN A warm and special thank you to Liz Rankin (End-of-Life Facilitator and Education Coordinator) and Mandy Coombes (End-of-Life Care Education Facilitator for Sue Ryder) for
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Box 2. Changes in practice Review policies and procedures
Update paperwork Look into subject more
Have plans for end-of-life care
Get support for myself
Respect other people’s views about death
Discuss with staff team
Will alert other colleagues to the study day
Will use information and paperwork from study day in workplace
Will look into using one page profiles
Talk about death
Discuss the route to care with the staff team
Discuss feelings with staff about what to expect when end of life time comes
Will start to plan care
Be aware of other Now know what people’s feelings to do when someone dies, so will inform others
Box 3. Comments from evaluation sheets The importance of early detection of health issues and the role of the GP
Now know how to provide care for person at end of life
Awareness Will use course of diagnostic paperwork in my overshadowworkplace ing—behaviour of person is often aligned to learning disability
I now know who to contact
Better understanding of the roles of different professionals
Will ask for Will use one-page support for myself profile and will use easy-read information
all their help in planning and organising the study day. Acknowledgements also go to Shelagh Thompson (Macmillan Living Well Project Lead and Associate Macmillan Development Manager), Jennie Kilkenny (Clinical Nurse Specialist Palliative Care at Sue Ryder), Mim Winkworth (Clinical Nurse Specialist, Palliative Care) and Teresa Eckley (District Nurse, Berkshire Healthcare NHS Foundation Trust), who delivered presentations on the day. Their input, time and experience were invaluable. Blackman N (2008) The development of an assessment tool for the bereavement needs of people with learning disabilities. Br J Learning Disabilities 36: 165–70 Boyden P, Freeman A, Offen L (2009) Setting up and running a loss and bereavement support group for adults with learning disabilities. Br J Learning Disabilities
LEARNING POINTS
w People with learning disabilities are living longer and, as a consequence, will require some form of care from paid carers, whether in their own homes, from supported living or from residential care w Education and training about end-of-life care is required for paid carers who support people with learning disabilities w Better partnership between learning disability services and palliative care is required to provide good-quality care for people with learning disabilities at the end of life w Community nurses must ensure that paid carers are given guidance about accessing services when caring for an individual with learning disabilities at the end of life
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38: 35–40 Campbell A, Bell D (2010) ‘Sad, just sad’: a woman with a learning disability experiencing bereavement. Br J Learning Disabilities 39: 11–6 Cardy P (2005) Learning disability and palliative care. Int J Palliative Nurs 11(1): 14 CHANGE (2011) We are Living Well but Dying Matters. National Council for Palliative Care and the National End-of-Life Care Programme. CHANGE, London Clarkson R, Murphy GH, Coldwell JB, Dawson DL (2009) What characteristics do adults with intellectual disabilities value in direct support staff within residential forensic services? J Intellect Dev Disabil 34: 238–98 Cross H, Cameron M, Marsh S,Tuffrey-Wijne I (2012) Practical approaches towards improving end-of-life care for people with intellectual disabilities: effectiveness and sustainability. J Palliative Med 15(3): 322–6 Department of Health (2001) Valuing People: A New Strategy for People with Learning Disability for the 21st Century. http://tinyurl.com/q3zf545 (accessed 17 January 2014) Department of Health (2005) Mental Capacity Act 2005. www.legislation.gov.uk/ ukpga/2005/9/contents (accessed 25 March 2014) Dodevska GA,Vassos MV (2013) What qualities are valued in residential direct care workers from the perspective of people with an intellectual disability and managers of accommodation services? J Intellect Disabil Res 57(7): 601–15 Duplock L, Oliver D, Forrester-Jones R (2009) Improving care for patients with intellectual disabilities. Eur J Palliat Care 16(2): 66–8 European Association for Palliative Care (2009) White paper on standards and norms for hospice and palliative care in Europe: recommendations from the European Association for Palliative Care. Eur J Palliative Care 16(6): 278–89 Flynn M, Brown Salomons H, Burns Salomons S, Keywood, K (2009) The palliative care experiences of adults with learning disabilities/intellectual disability: the implications for ethical decision making. Int J Disability Human Dev 8(1): 25–32 Gomes B, Clanzani N, Higginson IJ (2011) Reverse of the British trends in place of death: time series analysis 2004–2010. Palliat Med 26(2): 102–7 Heslop P, Blair B, Fleming P, Hoghton M, Marriott A, Russ L (2013) Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD). University of Bristol/Department of Health. http://tinyurl.com/oklrx5r (accessed 25 March 2014) Li S, Ng J (2008) End-of-life care: nurses’ experiences in caring for dying patients with profound learning disabilities: a descriptive case study. Palliat Med 22(8): 949–55 McEnhill L (2013) Widening Access to Palliative Care for People with Learning Disabilities: Guidance and Resources for Professionals. http://tinyurl.com/p8b7k6v (accessed 17 January 2014) McEvoy J, McHale R, Tierney E (2012) Concept of death and perceptions of bereavement in adults with learning disabilities. J Intellect Disability Res 56(2): 191–203 Mencap (2007) Death by Indifference. http://tinyurl.com/nt48n4h (accessed 20 January 2014) NHS National End-of-Life Care Programme (2011) The Route to Success in End-ofLife Care: Achieving Quality for People with Learning Disabilities. http://tinyurl.com/ o7u3v3a (accessed 20 January 2014) Oxford English Dictionary (2013) Oxford English Dictionary. Oxford University Press, Oxford Parliamentary and Health Service Ombudsman (2009) Six Lives: The Provision of Public Services to People with Learning Disabilities. http://tinyurl.com/qzuga35 (accessed 20 January 2014) Payne S (2010) White Paper on improving support for family care. Part 2. Eur J Palliat Care 17(6): 286–90 Regnard C, Matthews D, Gibson L et al (2003) Difficulties in identifying distress and its causes in people with severe communication problems. Int J Palliat Nurs 9(3): 173–6 Royal College of General Practitioners and Royal College of Nursing (2012) Matters of Life and Death: Helping People to Live Well until they Die. http://tinyurl.com/ nqa6xfs (accessed 20 January 2014) Ryan K, Guerin S, Dodd P, McEvoy J (2010) Exploring the experiences of people with intellectual disabilities when service users die. Br J Learning Disabilities 39(4): 259–65 Ryan K, Guerin S, Dodd P, McEvoy J (2011) End-of-life care for people with intellectual disabilities: paid carers’ perspectives. J Appl Res Intellectual Disabilities 24(3): 199–207 Ryan J, McCarthy J, Graham M (2012) How clients cope with the death of a parent. Learning Disability Pract 15(4): 14–8 Saunders C (2010) End-of-Life Care Strategy: 2nd Annual Report. Department of Health. http://tinyurl.com/ozcerqj (accessed 20 January 2014) Tague NR (2004) The Quality Toolbox, 2nd edn. ASQ Quality Press, Milwaukee WI Tuffrey-Wijne I (2012) A new model for breaking bad news to people with intellectual disabilities. Palliat Med 27(1): 5–12 Wiese M, Stancliffe R, Balandin S et al (2012) End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services. J Appl Res Intellectual Disabilities 25(6): 571–83
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RESEARCH
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