Review
The challenges of providing palliative care for people with intellectual disabilities: a literature review Susie Dunkley, Rachel Sales
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here is an emerging body of literature and evidence informing practice related to intellectual disabilities and palliative care provision (Morton-Nance and Schafer, 2012; Bekkema et al, 2014). People with intellectual disabilities often face barriers to accessing effective, timely, and appropriate health care (Emerson et al, 2011). Consequently, this group is often marginalised from mainstream health care, with the result that their specific health needs are not addressed (Michael, 2008; Mencap, 2012). Compelling evidence of inequity in health-care provision for people with intellectual disabilities in the UK was found in the Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities (Michael, 2008). In response to one of the recommendations of this report, the Confidential Inquiry into Premature Deaths in People with Intellectual Disability was undertaken (Heslop et al, 2013). This inquiry concluded that there was a lack of end-of-life planning for this client group and recommended that those requiring palliative care should be under the care of a specialist palliative care team supported by the framework of the UK’s Mental Capacity Act 2005. There are 1.5 million people with intellectual disabilities in the UK, with the Department of Health (DH) defining intellectual disability as:
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‘The presence of a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence); with a reduced ability to cope independently (impaired social functioning), which started before adulthood, with a lasting effect on development.’ (DH, 2001, p14)
Life expectancy for people with intellectual disabilities in the UK, as for the general population, has increased owing to improved health and social care (National End of Life Care Programme, 2011). This increases the chance of
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Abstract
People with intellectual disabilities are often marginalised from mainstream health-care services because of the complexities of their disability. They are under-referred to specialist palliative care owing to a limited understanding of its role and little collaborative working. Furthermore, professionals caring for people with intellectual disabilities and palliative care services often lack knowledge about and confidence in their ability to meet the needs of people with an intellectual disability who require palliative care. This literature review explores the challenges of providing palliative care for people with intellectual disability. It highlights that training requirements need to be effectively identified, referrals between professional groups made, and the perspectives of patients understood to overcome the marginalisation of people with intellectual disability. There is a need for ongoing staff development focusing on staff confidence, collaborative working between professionals, and the empowerment of people with intellectual disability to be involved in decisions about their end-of-life care. Further research is needed to examine the most effective way of capturing the perspectives of those with intellectual disability and of enabling people with intellectual disability to access and engage with health surveillance, cancer screening, and palliative care services. Key words: Learning disability l Intellectual disability l Intellectual impairment l End-of-life care l Palliative care l Equity l Access
people developing a life-limiting condition such as cancer, increasing the need for palliative care in this client group. It is vital that people with intellectual disabilities are able to access palliative care services that are responsive to their needs to prevent the continued inequity of care provision. The End of Life Care Strategy (DH, 2008) emphasised the need to provide high quality endof-life care to all, irrespective of gender, sexual orientation, race, ethnicity, socio-economic means, diagnosis, or disability. Yet the National End of Life Care Programme (2011) suggested that staff in hospices and hospitals often lack experience of caring for people with intellectual disabilities who are dying. It has also been suggested that professional carers of people with
Susie Dunkley is Hospice Community Nurse Specialist, St Peter’s Hospice, Charlton Road, Bristol, BS10 6NL, UK; Rachel Sales is Senior Lecturer, Department of Nursing and Midwifery, University of the West of England, Bristol, UK Correspondence to: Susie Dunkley susie.dunkley@ stpetershospice.org
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intellectual disabilities are generally unsure of how to access palliative care support and lack confidence when caring for people with intellectual disabilities in their own environment when they have palliative care needs (Reddall, 2010). The provision of palliative care for people with intellectual disabilities must therefore acknowledge their specific needs in order to be accessible, effective, and equitable.
Aim The aim of this literature review was to explore the challenges of providing effective palliative care for people with intellectual disabilities.
Method The database searches were limited to a 10-year period, to include the time in the UK when key government legislation and initiatives arose that influenced the delivery of end-of-life care and intellectual disability care, including the Mental Capacity Act 2005 (Parliament of the UK, 2005; DH, 2008; Michael, 2008). However, the DH’s seminal strategy Valuing People: A New Strategy for Learning Disability for the 21st Century (DH, 2001) was included to reflect the influence that this publication had in the field of intellectual disability. Literature was selected from a broad area including nursing, mental health, medicine, and social care, to reflect the recommended multiprofessional team approach to caring for adults with intellectual disabilities and palliative care needs. The CINAHL, British Nursing Index, MEDLINE, PsychINFO, Allied and Alternative Medicine Database, Applied Social Sciences Index and Abstracts, and Social Services Abstracts, Social Policy and Practice databases were searched. Although the main aim of the review was to explore the challenges of palliative care in relation to adults with intellectual disabilities within the authors’ practice area of the UK, research from outside the UK was also reviewed in order to access all the relevant literature. The three key areas of adults with intellectual disabilities, palliative care, and access to services were broken down into keywords and concepts that are used interchangeably in the literature. Therefore in addition to ‘intellectual disability’, the terms ‘learning difficulty,’ ‘learning impairment’, ‘intellectual impairment’, ‘intellectual disability’, and ‘intellectual difficulty’ were used. Similarly, ‘end-of-life care’, ‘terminal care’ and ‘dying’ were used, as well as ‘palliative care’. The terms ‘access’, ‘equity’, ‘inequity’, ‘hospice’, ‘hospital’, ‘community nurse’, ‘district nurse’, ‘community nurse specialist’, and ‘palliative care specialist’ were all
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used when considering access to services. Truncation and Boolean operators were used to both expand and focus the search. Papers about children were excluded, as were papers about adults with dementia. Polit and Beck (2012) acknowledged the need to delimit a search in order to focus it on the most relevant information. The search returned over 90 publications from North America, Europe, and the UK discussing issues surrounding intellectual disability and palliative care, but little primary research that explored the challenges of caring for people with intellectual disabilities who also needed palliative care. The primary research that was uncovered was generally written by the same small number of researchers. This is a limitation, as the information found was quite homo genous. Indeed, several of the studies selected for critical analysis were written in collaboration with one particular researcher, Dr Irene TuffreyWijne, a pioneering researcher in intellectual disability and end-of-life care. Polit and Beck’s (2012) framework and the Critical Appraisal Skills Programme (2010) framework were used to critically appraise the research found. This enabled critical analysis of the papers and a detailed consideration of ethical issues, which are of particular importance in relation to vulnerable adults such as this client group.
Findings Three themes emerged from the literature review: a lack of confidence and awareness in staff providing palliative care to people with intellectual disabilities, barriers to communication, and the difficulty in obtaining the patient’s perspective of accessing and receiving palliative care.
Staff confidence and knowledge Bekkema et al (2014) questioned the quality of end-of-life care possible within an intellectual disability setting, given the lack of knowledge and training of the nurses and social workers. Cartlidge and Read (2010) found that challenges encountered when providing palliative care for people with intellectual disabilities are largely due to insufficient insight into living with intellectual disabilities and the inadequate involvement of specialist palliative care services. These challenges included difficulties with communication and management of the person’s condition, and insufficient professional knowledge and skills to meet their needs. They concluded that, for staff to feel confident and competent to provide palliative care to patients with intellectual disability, close collaboration
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❛People with intellectual disabilities often face barriers to accessing effective, timely, and appropriate health care ...❜
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with intellectual disability professionals is needed. Where this already exists, it is greatly valued by all those involved. Collaboration enhances the overall therapeutic relationship, helping to build a rapport with the patient that is essential for holistic assessment. This was recognised by Read and Cartlidge (2012) and Morton-Nance and Schafer (2012), who highlighted the benefits of intellectual disability professionals and palliative care services working together to achieve effective end-of-life care. It is also supported by the earlier findings of Watchman (2005) that a lack of knowledge of other professionals’ roles and expertise resulted in little collaboration between them. Furthermore, early referral of people with intellectual disabilities to specialist palliative care services is key to facilitating their engagement with such care. Tuffrey Wijne et al (2008) suggested that early referral of people with intellectual disabilities to palliative care services is beneficial as time is needed not only to build up trust and familiarity with the services but also for the palliative care professionals to gain knowledge of the patient’s lifestyle and usual behaviour. Cartlidge and Read (2010) also identified that staff lacked confidence when caring for people with intellectual disabilities, and linked this to their having insufficient opportunities to receive further training and education. This finding was echoed by Ryan et al (2010), who observed that although intellectual disability and palliative care staff are motivated to provide the best possible care to the patient, they perceive themselves as inadequately trained and prepared for this role. Five broad themes around issues that affect care for people with intellectual disabilities were identified by Ryan et al (2011a). These were staff attitudes toward palliative care provision, the emotional impact of this care, specific issues that increased the emotional distress felt by staff, the support needed, and their relationship with the palliative care professionals. Ryan et al (2011a) also concluded, in keeping with their earlier study (Ryan et al, 2010), that intellectual disability staff find providing palliative care to their patients rewarding, particularly when a ‘good death’ is achieved, but experience stress when they feel unprepared to provide care because of a lack of knowledge, skills, and resources. This lack of preparation and awareness results in participants feeling emotionally burdened and guilty because the quality of care is compromised. Hahn and Cadogan (2011) suggested that implementing a targeted palliative care educational programme tailored to the needs of care staff can increase confidence in palliative care provision.
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This not only can improve the overall quality of care but also can lessen the emotional burden on the professional carer. Li and Ng (2008) identified that knowledge of the patient with intellectual disabilities before and after the onset of their terminal disease was crucial to identifying any changes in their behaviour that could indicate disease progression. Such knowledge enables nurses to make appropriate management choices and engage in advance care planning. If this knowledge is not obtained, symptoms of disease progression that could be palliated are not recognised and end-of-life choices, such as preferred place of death, are not explored (DH, 2008). A good working relationship between key workers can facilitate the accumulation of this knowledge. Assessment of distress can also be enhanced by the use of tools such as Regnard et al’s (2007) Disability Distress Assessment Tool, which uses changes in behaviour as indicators of distress.
❛It is vital that people with intellectual disabilities are able to access palliative care services that are responsive to their needs to prevent the continued inequity of care provision.❜
Communication Communication was found by Tuffrey-Wijne et al (2005) to be the major concern for palliative care professionals. This encompassed areas of assessment, consent, patient comprehension, collusion, and involvement of patients in their end-of-life care and advance care planning decisions. Again, an association was made between improved training and professionals feeling empowered to overcome these concerns. Tuffrey-Wijne et al (2005) concluded that training should focus on developing communication and assessment skills relevant to this client group. Participants in their study recognised that, although they already possessed significant communication skills, they required additional skills in the key components of alternative communication with people whose ability to verbally communicate is compromised owing to their intellectual disability. This supports earlier work by Lindop and Read (2000), who found that people with intellectual disability could access effective palliative care provision at home only if the district nurses understood the nature of their intellectual disability and possessed the appropriate communication skills to meet their needs. Donovan (2002) also observed how intellectual disability nurses depended on their skills to interpret non-verbal signals to identify pain, such as facial expression and changes in usual behaviour. Tuffrey-Wijne et al (2007a) concluded that social, emotional and cognitive issues, problems surrounding assessment, and the impact that the person with intellectual disability has on staff and other patients all affected the provision
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of palliative care to people with intellectual disabilities. These included concerns not only about how to effectively communicate with the patients but also about how to manage relatives’ reluctance to allow open discussions with the patient regarding the terminal nature of their disease for fear of doing more harm. Family members often find themselves in the role of protector and interpreter, as demonstrated by the findings of Tuffrey-Wijne et al (2007a), who reported that staff often relied on family or carers to gain an understanding of patients’ emotions or symptoms. Although patients’ understanding of their illness may be compromised, opportunities to discuss their condition should be provided. Read and Cartlidge (2012) stressed that professionals have a duty to provide opportunities for discussion. However, Tuffrey-Wijne et al (2009) found that when doctors disclosed cancer diagnoses to people with intellectual disabilities, they failed to give them clear information about their condition or treatment options, and instead explained these to family members. TuffreyWijne et al (2010) suggested that the desire to protect people with intellectual disabilities from the truth is a result of professionals not wanting to cause distress, which is difficult to manage effectively. A new model for breaking bad news to people with intellectual disabilities advocates an ongoing process of disclosure, where understanding of the situation builds over time (Tuffrey-Wijne, 2012). Guidelines to ensure this process is in the best interests of the person with a learning disability are essential to prevent harm (Tuffrey-Wijne et al, 2013). Tuffrey-Wijne et al’s (2007a) study recognised that people with intellectual disabilities demanded more time-intensive intervention from hospice palliative care staff. This had an impact on the staff’s overall workload and was stressful. As discussed previously, early referral to palliative care services allows time for trust to build and familiarity with the patient’s level of communication to develop, thereby reducing this stress. Ryan et al’s (2011b) work further supported the findings of Tuffrey-Wijne et al (2007a) that relatives are used as communication proxies, which prevents direct engagement with the person with intellectual disabilities. Relatives were perceived as having a very influential role, often acting as gatekeepers to what information could be discussed. As well as this being a huge emotional burden for relatives to carry, it also meant that intellectual disability patients were rarely involved in open discussion about their illness. Ryan and McQuillan (2006) recommended
truth telling to prevent a conspiracy of silence that can result in further loss of control and choices. Ryan et al (2011b) concluded that the quality of palliative care for people with intellectual disabilities is inextricably linked to the communication skills of intellectual disability and palliative care staff.
Patient and family perspectives Tuffrey-Wijne (2002) identified five areas of difficulty regarding end-of-life care for people with intellectual disabilities: the course of the illness, consent issues, conflict with the family, accessing support services, and talking about the illness with both the patient and their family. Tuffrey-Wijne (2002) concluded that signs of distress can be mistaken for challenging behaviour rather than a symptom of physical discomfort. This is known as ‘diagnostic overshadowing’ and has been found to result not only in poor symptom palliation but also in late referral to diagnostic services (Tuffrey-Wijne et al, 2009). A diagnosis of cancer often depends on someone other than the intellecual disability patient identifying that something is wrong, e.g. through persistent complaints or change in behaviour (Tuffrey-Wijne et al, 2009). Training and support, the involvement of palliative care professionals, and collaborative working all help to contribute to the overall assessment of the patient’s condition and improve the care given. Tuffrey Wijne et al (2007b) highlighted the need to ascertain the perspectives of people with intellectual disabilities on end-of-life care. They concluded that professionals must endeavour to find strategies to enable people with intellectual disabilities to express their views about end-oflife care if end-of-life service provision for people with intellectual disabilities is to improve. This was echoed by Forbat and McCann’s (2010) study, which also found that people with intellectual disabilities and cancer are often marginalised by the over-paternalistic approach of health-care staff. This can prevent the opinions of people with intellectual disabilities being sought to inform service provision. Tuffrey-Wijne et al (2007b) demonstrated that Nominal Group Technique is an effective technique for obtaining views on end-of-life care from people with intellectual disabilities. It has also been shown to be successful in exploring the perspectives of people with intellectual disabilities in other contexts, such as their relationship with professional carers (Roeden et al, 2011). Tuffrey Wijne et al (2007b) suggested that it enables patients to explain and establish priorities for end-of-life care from their perspective, and does not cause distress.
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❛Understanding the training and support needs of all those involved with caring for people with intellectual disabilities at the end of their lives is crucial.❜
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They also found that people with intellectual disabilities are capable of thinking about death and dying and have valid opinions that need to be listened to. The most important factors identified were the wish to be involved in one’s own care, the importance of having friends and family around, and the need to be occupied and to be physically comfortable.
Discussion
Recommendations for further enquiry and research Much of the evidence in this literature review has focused on the challenges of providing effective palliative care from the perspectives of the professionals involved. For service provision to effectively respond to the needs of people with intellectual disabilities, which have been shown to be complex, efforts must be made to obtain their views and the views of those emotionally close to them (Aspinal et al, 2006). Research needs to focus on the most effective way of capturing the perspectives of those with intellectual disabilities who require palliative care and their families. Retrospective studies following patients’ deaths that reflect the views of those close to the patients would provide insight into their ‘lived experience’ of palliative care. In addition, diagnostic overshadowing, resulting in late referral to diagnostic services, can lead to a delay in diagnosis of a life-threatening condition, with subsequent missed opportunities for treatment (Tuffrey-Wijne et al, 2009; Taggart et al, 2011). Osborn et al (2012) found that people with intellectual disabilities are significantly less likely to receive cancer screening than those without intellectual disability. Research is therefore needed into not only how people with intellectual disabilities access palliative care, but also how easily they can access and engage with health surveillance and cancer screening.
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Implications for care and practice The literature reviewed in this paper has shown that the provision of palliative care for people with intellectual disabilities is complex and that people with intellectual disability are often marginalised from mainstream health care. If marginalisation is to be overcome and palliative care delivered equitably, strategies need to be put in place. These must focus on increasing the confidence of staff providing palliative care, developing collaborative ways of working between intellectual disability professionals, palliative care specialists, and primary care teams, and empowering people with intellectual disabilities to be involved in their care. This will
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enable training needs to be identified, appropriate referrals to be made, and the perspectives of people with intellectual disabilities to be sought. A recurrent observation throughout the literature is that people with intellectual disabilities are living longer and are therefore more likely to develop life-limiting diseases, with a need to access palliative care expertise. However, the referral rate to specialist palliative care is low, resulting in limited exposure for this patient group to palliative care professionals (Ryan et al, 2010). This in itself can lead to a reduced awareness of their particular needs and prevents appropriate service provision being anticipated for them. Developing roles to link palliative care specialist nurses with the intellectual disability specialty would help to identify barriers to equitable care and could lead research into this problem. Using care pathways for people with palliative care needs has been shown to improve the standard of care. However, if the specific needs of marginalised groups such as people with intellectual disabilities are not explored, equitable palliative care will not be achieved. Conclusions drawn by Tuffrey-Wijne in 2002 are echoed in the more recent literature, suggesting that addressing the palliative care needs of people with intellectual disability remains complex.
❛It is vital that the views of people with learning disabilities are harnessed in the most effective and sensitive way, and this is an area that requires further research.❜
Conclusion It is fundamental to effective palliative care provision that those providing it are confident, competent, and appropriately skilled. Therefore understanding the training and support needs of all those involved with caring for people with intellectual disabilities at the end of their lives is crucial. This needs to be coupled with collaborative working that is robust and evidence-based to ensure that people with intellectual disabilities have access to appropriate palliative care services. Finally, it is vital that the views of people with learning disabilities are harnessed in the most effective and sensitive way, and this is an JPN area that requires further research. I● Declaration of interests This work had no external sources of funding. The author has no conflicts of interest to declare. Aspinal F, Hughes R, Dunckley M, Addington-Hall J (2006) What is important to measure in the last months and weeks of life? A modified nominal group study. Int J Nurs Stud 43(4): 393–403 Bekkema N, de Veer AJ, Albers G, Hertogh CM, OnwuteakaPhilipsen BD, Francke AL (2014) Training needs of nurses and social workers in the end-of-life care for people with intellectual disabilities: a national survey. Nurse Educ Today 34(4): 494–500. doi: 10.1016/j.nedt.2013.07.018
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Cartlidge D, Read S (2010) Exploring the needs of hospice staff supporting people with an intellectual disability: a UK perspective. Int J Palliat Nurs 16(2): 93–8 Critical Appraisal Skills Programme (2010) 10 questions to help you make sense of qualitative research. http://media. wix.com/ugd/dded87_951541699e9edc71ce66c9bac473 4c69.pdf (accessed 18 June 2014) Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century. www. archive.official-documents.co.uk/document/ cm50/5086/5086.pdf (accessed 30 May 2014) Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for Adults at the End of Life. DH, London Donovan J (2002) Learning disability nurses’ experiences of being with clients who may be in pain. J Adv Nurs 38(5): 458–66 Emerson E, Baines S, Allerton L, Welch V (2011) Health Inequalities & People with Learning Disabilities in the UK: 2011. www.improvinghealthandlives.org.uk/securefiles/140530_1634//IHaL%202011-09%20HealthInequality2011.pdf (accessed 30 May 2014) Forbat L, McCann L (2010) Adults with intellectual disabilities affected by cancer: critical challenges for the involvement agenda. Eur J Cancer Care 19(1): 91–7. doi: 10.1111/j.1365-2354.2008.00979.x Hahn JE, Cadogan MP (2011) Development and evaluation of a staff training program on palliative care for persons with intellectual and developmental disabilities. J Policy Practice Intellect Disabil 8(1): 42–52. doi: 10.1111/j.1741-1130.2011.00288.x Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L (2013) Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD). www.bris.ac.uk/cipold/fullfinalreport.pdf (accessed 30 May 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. doi: 10.1177/0269216308096905 Lindop E, Read S (2000) District nurses’ needs: palliative care for people with learning disabilities. Int J Palliat Nurs 6(3): 117–22 Mencap (2012) Death by Indifference: 74 Deaths and Counting. A Progress Report 5 Years On. www.mencap. org.uk/74deaths (accessed 30 May 2014) Michael J (2008) Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/ prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_106126.pdf (accessed 30 May 2014) Morton-Nance S, Schafer T (2012) End of life care for people with a learning disability. Nurs Stand 27(1): 40–7 National End of Life Care Programme (2011) The Route to Success in End of Life Care - Achieving Quality for People with Learning Disabilities. www.nhsiq.nhs.uk/download.ashx?mid=8304&nid=8303 (accessed 30 May 2014) Osborn DP, Horsfall L, Hassiotis A, Petersen I, Walters K, Nazareth I (2012) Access to cancer screening in people with learning disabilities in the UK: cohort study in the health improvement network, a primary care research database. PLoS One 7(8): e43841. doi: 10.1371/journal. pone.0043841 Parliament of the UK (2005) Mental Capacity Act 2005. www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpga_20050009_en.pdf (accessed 9 June 2014) Polit DF, Beck CT (2012) Nursing Research: Generating and Assessing Evidence for Nursing Practice. 9th edn. Wolters Kluwer/Lippincott, Williams and Wilkins, Philadelphia Read S, Cartlidge D (2012) Critical reflections on end-of-life care for people with intellectual disabilities: a single case
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study approach. Int J Palliat Nurs 18(1): 23–7 Reddall C (2010) A palliative care resource for professional carers of people with learning disabilities. Eur J Cancer Care 19(4): 469–75. doi: 10.1111/j.1365-2354.2009.01072.x Regnard C, Reynolds J, Watson B, Matthews D, Gibson L, Clarke C (2007) Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT). J Intellect Disabil Res 51(Pt 4): 277–92 Roeden JM, Maaskant MA, Curfs LMG (2011) The views and clients with mild intellectual disabilities regarding their working relationships with caregivers. J Applied Nurs Res 24(5): 398–406 Ryan K, McQuillan R Ethical decision-making. In: Read S, ed. (2006) Palliative Care for People with Learning Disabilities. Quay Books, London: 75–91 Ryan K, McEvoy J, Guerin S, Dodd P (2010) An exploration of the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. Palliat Med 24(6): 566-72. doi: 10.1177/0269216310371413 Ryan K, Guerin S, Dodd P, McEvoy J (2011a) End-of-life care for people with intellectual disabilities: paid carer perspectives. J Applied Res Intellectual Disabil 24(3): 199–207 Ryan K, Guerin S, Dodd P, McEvoy J (2011b) Communication contexts about illness, death and dying for people with intellectual disabilities and life-limiting illness. Palliat Support Care 9(2): 201–8. doi: 10.1017/ S1478951511000137 Taggart L, Truesdale-Kennedy M, McIlfatrick S (2011) The role of community nurses and residential staff in supporting women with intellectual disability to access breast screening services. J Intellect Disabil Res 55(1): 41–52. doi: 10.1111/j.1365-2788.2010.01345.x Tuffrey-Wijne I (2002) The palliative care needs of people with intellectual disabilities: a case study. Int J Palliat Nurs 8(5): 222–32 Tuffrey-Wijne I (2012) A new model for breaking bad news to people with intellectual disabilities. Palliat Med 27(1): 5–12 Tuffrey-Wijne I, Hollins S, Curfs L (2005) Supporting patients who have intellectual disabilities: a survey investigating staff training needs. Int J Palliat Nurs 11(4): 182–8 Tuffrey-Wijne I, McEnhill L, Curfs L, Hollins S (2007a) Palliative care provision for people with intellectual disabilities: interviews with specialist palliative care professionals in London. Palliat Med 21(6): 493–9 Tuffrey-Wijne I, Bernal J, Butler G, Hollins S, Curfs L (2007b) Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end-of-life care provision. J Adv Nurs 58(1): 80–9 Tuffrey-Wijne I, Curfs L, Hollins S (2008) Access to palliative care services by people with learning disabilities: is there equity? Adv Mental Health Learn Disabil 2(2): 42–8 Tuffrey-Wijne I, Bernal J, Hubert J, Butler G, Hollins S (2009) People with learning disabilities who have cancer: an ethnographic study. Br J Gen Pract 59(564): 503–9. doi: 10.3399/bjgp09X453413 Tuffrey-Wijne I, Bernal J, Hollins S (2010) Disclosure and understanding of cancer diagnosis and prognosis for people with intellectual disabilities: findings from an ethnographic study. Eur J Oncol Nurs 14(3): 224–30. doi: 10.1016/j.ejon.2010.01.021 Tuffrey-Wijne I, Giatras N, Butler G, Cresswell A, Manners P, Bernal J (2013) Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities. J Appl Res Intellect Disabil 26(3): 231–42. doi: 10.1111/ jar.12026 Watchman K (2005) Practitioner-raised issues and end-oflife care for adults with down syndrome and dementia. J Policy Pract Intellect Disabil 2(2): 156–62
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The challenges of providing palliative care for people with intellectual disabilities: a literature review Susie Dunkley, Rachel Sales
T
here is an emerging body of literature and evidence informing practice related to intellectual disabilities and palliative care provision (Morton-Nance and Schafer, 2012; Bekkema et al, 2014). People with intellectual disabilities often face barriers to accessing effective, timely, and appropriate health care (Emerson et al, 2011). Consequently, this group is often marginalised from mainstream health care, with the result that their specific health needs are not addressed (Michael, 2008; Mencap, 2012). Compelling evidence of inequity in health-care provision for people with intellectual disabilities in the UK was found in the Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities (Michael, 2008). In response to one of the recommendations of this report, the Confidential Inquiry into Premature Deaths in People with Intellectual Disability was undertaken (Heslop et al, 2013). This inquiry concluded that there was a lack of end-of-life planning for this client group and recommended that those requiring palliative care should be under the care of a specialist palliative care team supported by the framework of the UK’s Mental Capacity Act 2005. There are 1.5 million people with intellectual disabilities in the UK, with the Department of Health (DH) defining intellectual disability as:
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‘The presence of a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence); with a reduced ability to cope independently (impaired social functioning), which started before adulthood, with a lasting effect on development.’ (DH, 2001, p14)
Life expectancy for people with intellectual disabilities in the UK, as for the general population, has increased owing to improved health and social care (National End of Life Care Programme, 2011). This increases the chance of
International Journal of Palliative Nursing 2014, Vol 20, No 6
Abstract
People with intellectual disabilities are often marginalised from mainstream health-care services because of the complexities of their disability. They are under-referred to specialist palliative care owing to a limited understanding of its role and little collaborative working. Furthermore, professionals caring for people with intellectual disabilities and palliative care services often lack knowledge about and confidence in their ability to meet the needs of people with an intellectual disability who require palliative care. This literature review explores the challenges of providing palliative care for people with intellectual disability. It highlights that training requirements need to be effectively identified, referrals between professional groups made, and the perspectives of patients understood to overcome the marginalisation of people with intellectual disability. There is a need for ongoing staff development focusing on staff confidence, collaborative working between professionals, and the empowerment of people with intellectual disability to be involved in decisions about their end-of-life care. Further research is needed to examine the most effective way of capturing the perspectives of those with intellectual disability and of enabling people with intellectual disability to access and engage with health surveillance, cancer screening, and palliative care services. Key words: Learning disability l Intellectual disability l Intellectual impairment l End-of-life care l Palliative care l Equity l Access
people developing a life-limiting condition such as cancer, increasing the need for palliative care in this client group. It is vital that people with intellectual disabilities are able to access palliative care services that are responsive to their needs to prevent the continued inequity of care provision. The End of Life Care Strategy (DH, 2008) emphasised the need to provide high quality endof-life care to all, irrespective of gender, sexual orientation, race, ethnicity, socio-economic means, diagnosis, or disability. Yet the National End of Life Care Programme (2011) suggested that staff in hospices and hospitals often lack experience of caring for people with intellectual disabilities who are dying. It has also been suggested that professional carers of people with
Susie Dunkley is Hospice Community Nurse Specialist, St Peter’s Hospice, Charlton Road, Bristol, BS10 6NL, UK; Rachel Sales is Senior Lecturer, Department of Nursing and Midwifery, University of the West of England, Bristol, UK Correspondence to: Susie Dunkley susie.dunkley@ stpetershospice.org
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intellectual disabilities are generally unsure of how to access palliative care support and lack confidence when caring for people with intellectual disabilities in their own environment when they have palliative care needs (Reddall, 2010). The provision of palliative care for people with intellectual disabilities must therefore acknowledge their specific needs in order to be accessible, effective, and equitable.
Aim The aim of this literature review was to explore the challenges of providing effective palliative care for people with intellectual disabilities.
Method The database searches were limited to a 10-year period, to include the time in the UK when key government legislation and initiatives arose that influenced the delivery of end-of-life care and intellectual disability care, including the Mental Capacity Act 2005 (Parliament of the UK, 2005; DH, 2008; Michael, 2008). However, the DH’s seminal strategy Valuing People: A New Strategy for Learning Disability for the 21st Century (DH, 2001) was included to reflect the influence that this publication had in the field of intellectual disability. Literature was selected from a broad area including nursing, mental health, medicine, and social care, to reflect the recommended multiprofessional team approach to caring for adults with intellectual disabilities and palliative care needs. The CINAHL, British Nursing Index, MEDLINE, PsychINFO, Allied and Alternative Medicine Database, Applied Social Sciences Index and Abstracts, and Social Services Abstracts, Social Policy and Practice databases were searched. Although the main aim of the review was to explore the challenges of palliative care in relation to adults with intellectual disabilities within the authors’ practice area of the UK, research from outside the UK was also reviewed in order to access all the relevant literature. The three key areas of adults with intellectual disabilities, palliative care, and access to services were broken down into keywords and concepts that are used interchangeably in the literature. Therefore in addition to ‘intellectual disability’, the terms ‘learning difficulty,’ ‘learning impairment’, ‘intellectual impairment’, ‘intellectual disability’, and ‘intellectual difficulty’ were used. Similarly, ‘end-of-life care’, ‘terminal care’ and ‘dying’ were used, as well as ‘palliative care’. The terms ‘access’, ‘equity’, ‘inequity’, ‘hospice’, ‘hospital’, ‘community nurse’, ‘district nurse’, ‘community nurse specialist’, and ‘palliative care specialist’ were all
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used when considering access to services. Truncation and Boolean operators were used to both expand and focus the search. Papers about children were excluded, as were papers about adults with dementia. Polit and Beck (2012) acknowledged the need to delimit a search in order to focus it on the most relevant information. The search returned over 90 publications from North America, Europe, and the UK discussing issues surrounding intellectual disability and palliative care, but little primary research that explored the challenges of caring for people with intellectual disabilities who also needed palliative care. The primary research that was uncovered was generally written by the same small number of researchers. This is a limitation, as the information found was quite homo genous. Indeed, several of the studies selected for critical analysis were written in collaboration with one particular researcher, Dr Irene TuffreyWijne, a pioneering researcher in intellectual disability and end-of-life care. Polit and Beck’s (2012) framework and the Critical Appraisal Skills Programme (2010) framework were used to critically appraise the research found. This enabled critical analysis of the papers and a detailed consideration of ethical issues, which are of particular importance in relation to vulnerable adults such as this client group.
Findings Three themes emerged from the literature review: a lack of confidence and awareness in staff providing palliative care to people with intellectual disabilities, barriers to communication, and the difficulty in obtaining the patient’s perspective of accessing and receiving palliative care.
Staff confidence and knowledge Bekkema et al (2014) questioned the quality of end-of-life care possible within an intellectual disability setting, given the lack of knowledge and training of the nurses and social workers. Cartlidge and Read (2010) found that challenges encountered when providing palliative care for people with intellectual disabilities are largely due to insufficient insight into living with intellectual disabilities and the inadequate involvement of specialist palliative care services. These challenges included difficulties with communication and management of the person’s condition, and insufficient professional knowledge and skills to meet their needs. They concluded that, for staff to feel confident and competent to provide palliative care to patients with intellectual disability, close collaboration
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❛People with intellectual disabilities often face barriers to accessing effective, timely, and appropriate health care ...❜
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with intellectual disability professionals is needed. Where this already exists, it is greatly valued by all those involved. Collaboration enhances the overall therapeutic relationship, helping to build a rapport with the patient that is essential for holistic assessment. This was recognised by Read and Cartlidge (2012) and Morton-Nance and Schafer (2012), who highlighted the benefits of intellectual disability professionals and palliative care services working together to achieve effective end-of-life care. It is also supported by the earlier findings of Watchman (2005) that a lack of knowledge of other professionals’ roles and expertise resulted in little collaboration between them. Furthermore, early referral of people with intellectual disabilities to specialist palliative care services is key to facilitating their engagement with such care. Tuffrey Wijne et al (2008) suggested that early referral of people with intellectual disabilities to palliative care services is beneficial as time is needed not only to build up trust and familiarity with the services but also for the palliative care professionals to gain knowledge of the patient’s lifestyle and usual behaviour. Cartlidge and Read (2010) also identified that staff lacked confidence when caring for people with intellectual disabilities, and linked this to their having insufficient opportunities to receive further training and education. This finding was echoed by Ryan et al (2010), who observed that although intellectual disability and palliative care staff are motivated to provide the best possible care to the patient, they perceive themselves as inadequately trained and prepared for this role. Five broad themes around issues that affect care for people with intellectual disabilities were identified by Ryan et al (2011a). These were staff attitudes toward palliative care provision, the emotional impact of this care, specific issues that increased the emotional distress felt by staff, the support needed, and their relationship with the palliative care professionals. Ryan et al (2011a) also concluded, in keeping with their earlier study (Ryan et al, 2010), that intellectual disability staff find providing palliative care to their patients rewarding, particularly when a ‘good death’ is achieved, but experience stress when they feel unprepared to provide care because of a lack of knowledge, skills, and resources. This lack of preparation and awareness results in participants feeling emotionally burdened and guilty because the quality of care is compromised. Hahn and Cadogan (2011) suggested that implementing a targeted palliative care educational programme tailored to the needs of care staff can increase confidence in palliative care provision.
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This not only can improve the overall quality of care but also can lessen the emotional burden on the professional carer. Li and Ng (2008) identified that knowledge of the patient with intellectual disabilities before and after the onset of their terminal disease was crucial to identifying any changes in their behaviour that could indicate disease progression. Such knowledge enables nurses to make appropriate management choices and engage in advance care planning. If this knowledge is not obtained, symptoms of disease progression that could be palliated are not recognised and end-of-life choices, such as preferred place of death, are not explored (DH, 2008). A good working relationship between key workers can facilitate the accumulation of this knowledge. Assessment of distress can also be enhanced by the use of tools such as Regnard et al’s (2007) Disability Distress Assessment Tool, which uses changes in behaviour as indicators of distress.
❛It is vital that people with intellectual disabilities are able to access palliative care services that are responsive to their needs to prevent the continued inequity of care provision.❜
Communication Communication was found by Tuffrey-Wijne et al (2005) to be the major concern for palliative care professionals. This encompassed areas of assessment, consent, patient comprehension, collusion, and involvement of patients in their end-of-life care and advance care planning decisions. Again, an association was made between improved training and professionals feeling empowered to overcome these concerns. Tuffrey-Wijne et al (2005) concluded that training should focus on developing communication and assessment skills relevant to this client group. Participants in their study recognised that, although they already possessed significant communication skills, they required additional skills in the key components of alternative communication with people whose ability to verbally communicate is compromised owing to their intellectual disability. This supports earlier work by Lindop and Read (2000), who found that people with intellectual disability could access effective palliative care provision at home only if the district nurses understood the nature of their intellectual disability and possessed the appropriate communication skills to meet their needs. Donovan (2002) also observed how intellectual disability nurses depended on their skills to interpret non-verbal signals to identify pain, such as facial expression and changes in usual behaviour. Tuffrey-Wijne et al (2007a) concluded that social, emotional and cognitive issues, problems surrounding assessment, and the impact that the person with intellectual disability has on staff and other patients all affected the provision
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of palliative care to people with intellectual disabilities. These included concerns not only about how to effectively communicate with the patients but also about how to manage relatives’ reluctance to allow open discussions with the patient regarding the terminal nature of their disease for fear of doing more harm. Family members often find themselves in the role of protector and interpreter, as demonstrated by the findings of Tuffrey-Wijne et al (2007a), who reported that staff often relied on family or carers to gain an understanding of patients’ emotions or symptoms. Although patients’ understanding of their illness may be compromised, opportunities to discuss their condition should be provided. Read and Cartlidge (2012) stressed that professionals have a duty to provide opportunities for discussion. However, Tuffrey-Wijne et al (2009) found that when doctors disclosed cancer diagnoses to people with intellectual disabilities, they failed to give them clear information about their condition or treatment options, and instead explained these to family members. TuffreyWijne et al (2010) suggested that the desire to protect people with intellectual disabilities from the truth is a result of professionals not wanting to cause distress, which is difficult to manage effectively. A new model for breaking bad news to people with intellectual disabilities advocates an ongoing process of disclosure, where understanding of the situation builds over time (Tuffrey-Wijne, 2012). Guidelines to ensure this process is in the best interests of the person with a learning disability are essential to prevent harm (Tuffrey-Wijne et al, 2013). Tuffrey-Wijne et al’s (2007a) study recognised that people with intellectual disabilities demanded more time-intensive intervention from hospice palliative care staff. This had an impact on the staff’s overall workload and was stressful. As discussed previously, early referral to palliative care services allows time for trust to build and familiarity with the patient’s level of communication to develop, thereby reducing this stress. Ryan et al’s (2011b) work further supported the findings of Tuffrey-Wijne et al (2007a) that relatives are used as communication proxies, which prevents direct engagement with the person with intellectual disabilities. Relatives were perceived as having a very influential role, often acting as gatekeepers to what information could be discussed. As well as this being a huge emotional burden for relatives to carry, it also meant that intellectual disability patients were rarely involved in open discussion about their illness. Ryan and McQuillan (2006) recommended
truth telling to prevent a conspiracy of silence that can result in further loss of control and choices. Ryan et al (2011b) concluded that the quality of palliative care for people with intellectual disabilities is inextricably linked to the communication skills of intellectual disability and palliative care staff.
Patient and family perspectives Tuffrey-Wijne (2002) identified five areas of difficulty regarding end-of-life care for people with intellectual disabilities: the course of the illness, consent issues, conflict with the family, accessing support services, and talking about the illness with both the patient and their family. Tuffrey-Wijne (2002) concluded that signs of distress can be mistaken for challenging behaviour rather than a symptom of physical discomfort. This is known as ‘diagnostic overshadowing’ and has been found to result not only in poor symptom palliation but also in late referral to diagnostic services (Tuffrey-Wijne et al, 2009). A diagnosis of cancer often depends on someone other than the intellecual disability patient identifying that something is wrong, e.g. through persistent complaints or change in behaviour (Tuffrey-Wijne et al, 2009). Training and support, the involvement of palliative care professionals, and collaborative working all help to contribute to the overall assessment of the patient’s condition and improve the care given. Tuffrey Wijne et al (2007b) highlighted the need to ascertain the perspectives of people with intellectual disabilities on end-of-life care. They concluded that professionals must endeavour to find strategies to enable people with intellectual disabilities to express their views about end-oflife care if end-of-life service provision for people with intellectual disabilities is to improve. This was echoed by Forbat and McCann’s (2010) study, which also found that people with intellectual disabilities and cancer are often marginalised by the over-paternalistic approach of health-care staff. This can prevent the opinions of people with intellectual disabilities being sought to inform service provision. Tuffrey-Wijne et al (2007b) demonstrated that Nominal Group Technique is an effective technique for obtaining views on end-of-life care from people with intellectual disabilities. It has also been shown to be successful in exploring the perspectives of people with intellectual disabilities in other contexts, such as their relationship with professional carers (Roeden et al, 2011). Tuffrey Wijne et al (2007b) suggested that it enables patients to explain and establish priorities for end-of-life care from their perspective, and does not cause distress.
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❛Understanding the training and support needs of all those involved with caring for people with intellectual disabilities at the end of their lives is crucial.❜
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They also found that people with intellectual disabilities are capable of thinking about death and dying and have valid opinions that need to be listened to. The most important factors identified were the wish to be involved in one’s own care, the importance of having friends and family around, and the need to be occupied and to be physically comfortable.
Discussion
Recommendations for further enquiry and research Much of the evidence in this literature review has focused on the challenges of providing effective palliative care from the perspectives of the professionals involved. For service provision to effectively respond to the needs of people with intellectual disabilities, which have been shown to be complex, efforts must be made to obtain their views and the views of those emotionally close to them (Aspinal et al, 2006). Research needs to focus on the most effective way of capturing the perspectives of those with intellectual disabilities who require palliative care and their families. Retrospective studies following patients’ deaths that reflect the views of those close to the patients would provide insight into their ‘lived experience’ of palliative care. In addition, diagnostic overshadowing, resulting in late referral to diagnostic services, can lead to a delay in diagnosis of a life-threatening condition, with subsequent missed opportunities for treatment (Tuffrey-Wijne et al, 2009; Taggart et al, 2011). Osborn et al (2012) found that people with intellectual disabilities are significantly less likely to receive cancer screening than those without intellectual disability. Research is therefore needed into not only how people with intellectual disabilities access palliative care, but also how easily they can access and engage with health surveillance and cancer screening.
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Implications for care and practice The literature reviewed in this paper has shown that the provision of palliative care for people with intellectual disabilities is complex and that people with intellectual disability are often marginalised from mainstream health care. If marginalisation is to be overcome and palliative care delivered equitably, strategies need to be put in place. These must focus on increasing the confidence of staff providing palliative care, developing collaborative ways of working between intellectual disability professionals, palliative care specialists, and primary care teams, and empowering people with intellectual disabilities to be involved in their care. This will
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enable training needs to be identified, appropriate referrals to be made, and the perspectives of people with intellectual disabilities to be sought. A recurrent observation throughout the literature is that people with intellectual disabilities are living longer and are therefore more likely to develop life-limiting diseases, with a need to access palliative care expertise. However, the referral rate to specialist palliative care is low, resulting in limited exposure for this patient group to palliative care professionals (Ryan et al, 2010). This in itself can lead to a reduced awareness of their particular needs and prevents appropriate service provision being anticipated for them. Developing roles to link palliative care specialist nurses with the intellectual disability specialty would help to identify barriers to equitable care and could lead research into this problem. Using care pathways for people with palliative care needs has been shown to improve the standard of care. However, if the specific needs of marginalised groups such as people with intellectual disabilities are not explored, equitable palliative care will not be achieved. Conclusions drawn by Tuffrey-Wijne in 2002 are echoed in the more recent literature, suggesting that addressing the palliative care needs of people with intellectual disability remains complex.
❛It is vital that the views of people with learning disabilities are harnessed in the most effective and sensitive way, and this is an area that requires further research.❜
Conclusion It is fundamental to effective palliative care provision that those providing it are confident, competent, and appropriately skilled. Therefore understanding the training and support needs of all those involved with caring for people with intellectual disabilities at the end of their lives is crucial. This needs to be coupled with collaborative working that is robust and evidence-based to ensure that people with intellectual disabilities have access to appropriate palliative care services. Finally, it is vital that the views of people with learning disabilities are harnessed in the most effective and sensitive way, and this is an JPN area that requires further research. I● Declaration of interests This work had no external sources of funding. The author has no conflicts of interest to declare. Aspinal F, Hughes R, Dunckley M, Addington-Hall J (2006) What is important to measure in the last months and weeks of life? A modified nominal group study. Int J Nurs Stud 43(4): 393–403 Bekkema N, de Veer AJ, Albers G, Hertogh CM, OnwuteakaPhilipsen BD, Francke AL (2014) Training needs of nurses and social workers in the end-of-life care for people with intellectual disabilities: a national survey. Nurse Educ Today 34(4): 494–500. doi: 10.1016/j.nedt.2013.07.018
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