Into the light

by Aidan Butler, Stewarts Hospital Services, Dublin 20


Nurses in intellectual disabilities are said to care for persons with an intellectual disability from the cradle to the grave. Persons with an intellectual disability (ID) are now living longer and on a global scale there is an increase in the number of older people (Botsford 2000). Because of technological and medical advances during the last century, adults with ID are living longer than the previous generation of parent caregivers (Fujiura and Parish 2007). Because of the early aging experienced by some groups, and sparse numbers of the very old, the ‘older adult’ with an ID is usually deemed to be 55 years and above (Bigby 2002). They are prone to a wide range of illnesses that may eventually lead to their death.

Aging in place

Concepts related to aging in place recommend that stability and connection to where you live are important factors. Furthermore, the merit and make.up of supports are crucial (Bigb, 2008). Aging in place is underpinned by opportunities to stay in one’s own home, irrespective of changing care needs (Forbat 2006). ID services are gradually addressing the difficulties for aging service users without ‘shipping them out’. If a person is to age in place, other residents should be considered in the decision-making process. In addition, it is essential that the Health Service Provider (HSP) does not provide less than optimal care to the other residents during any change and transition.

Concern has been expressed that persons with an ID are a vulnerable group who may not have the choice of where and with whom they live (Forbat and Wilkinson 2007). However, Jenkins (2000) states there is a concerted effort being made to empower persons with an ID. He contends that nurses in intellectual disabilities ought to develop positive attitudes which do not perpetuate the mistaken belief that it is a foregone conclusion that older people will move from independence to reliance. He also identifies the need for HSP catering for the needs of persons with an ID should be flexible. Originality and innovation are needed, underpinned by sound principles that support personal self-sufficiency. Straightforward environmental alterations can make the difference between being able to age in place or being forced to move to less supportive surroundings (McCarron and Lawlor 2003). Bigby (2002) states that there are no fixed policies or services to foster aging in place for persons with disabilities. She argues that aging in place requires staff to utilise more adaptable staffing models in order to manage age-related changes.

Palliative care

As people with intellectual disabilities live longer they develop an array of ill health and diseases that require the same healthcare as the generic population. Palliative care for individuals with intellectual disability is steadily gaining importance as healthcare professionals encounter an increasing number of individuals from diverse care settings who present with chronic care needs. Palliative care has been labelled as a new specialism. However, an anonymous 16th century writer encapsulates the essence of palliative care practice as: To cure, occasionally; to relieve, often; to comfort, always! (National Advisory Committee on Palliative Care 2001:3).

Palliative care is the dynamic and holistic care of individuals whose disease is unresponsive to healing treatment. The aim of palliative care is the attainment of best quality of life for individuals and their loved ones (Read and Elliot, 2006). Despite the importance of lessening inequalities in palliative care (National Institute for Clinical Excellence 2003), individual, specialised and practical misunderstandings continue to generate obstacles to providing appropriate palliative care services. In particular, this is the case for those not in the mainstream, for example, persons with ID (Read 2005). The recommendations offered by Corner (1999) provide an invaluable framework for fostering palliative care services. Corner’s framework addresses concerns applicable to various populations needing palliative care, including people with an ID.

  • Review obstacles or complicated aspects of service, service delivery or explicit facets of care
  • Methodical use of evidence-based research into practice
  • Regular and organised review and appraisal
  • A combined, reflective and self-analytical approach to practice and team work
  • The centre of attention upon the needs and experiences of the recipients.
Palliative care:
  • Affirms life and views dying as a natural process
  • Neither rushes nor postpones death
  • Provides release from pain and other stressful symptoms
  • Amalgamates the psychological and spiritual domains of patient care
  • Provides a support system to facilitate patients to live as actively as they can until death
  • Provides a support system to assist the family to cope during the patient’s sickness and in their own loss (WHO 1990).
Person-centred planning

Person-centred planning (PCP) is the recognition that individuals have a personal picture of their favoured future. Person-centred planning stimulates staff to listen to, grasp and support the resident in actualising his or her goals. It permits staff to feel pressure between what is sought.after and what exists for the resident right now. PCP challenges inaction in the system by a planning process which takes cognisance of societal, spiritual, emotional and private issues (Medley 2006).

The care passage of a person with an ID should be supported by an combination of a palliative care approach and a person-centred approach reliant on individual requirements. These needs can be subdivided into the following stages: awareness of ill health, diagnosis, treatment and prognosis (Read and Elliott 2006).

Awareness of ill health

The primary detection of ill health in persons with an ID may not be straightforward, and may be compounded by the fact that some individuals may not be able to verbalise their discomfort. The DisDat tool has been developed specifically for people with an ID (Regnard et al. 2003). There is a positive correlation between knowing the person with an ID and recognising their distress. ‘Distress may be hidden, but it is never silent’ (Regnard et al. 2003:176). According to Tuffrey-Wijne (2003), communication is the greatest obstacle to successful medical assessment. In light of the communication difficulties experienced by persons with an ID, carers who know the person well are ideally positioned to note subtle changes from baseline assessment (Tuffrey-Wijne 2002). Problems with the assessment of persons with an ID may be further exacerbated when the person with an ID experiencing pain and distress is transferred from their own normal and well-known surroundings (Read and Thompson-Hill 2008).

Persons with an ID may be dependent on people and rely on them to be aware of the signs and symptoms of their ill health. Professional carers need to be mindful of maintaining watchfulness, which is attentive to obvious cues as well as slight changes in baseline behaviours.

Education may play a valued role in this regard (Read and Elliott 2006). This echoes Barr and Gates’ (2008) assertion that education should be an overarching requisite for staff caring for persons with an ID. In the area of ID and aging, there is an emerging change in HSP’s response to their models of care and upskilling of staff. For instance, the International Association for the Scientific Study of Intellectual Disability (IASSID) has an international working party focused on these issues ( Health care professional and palliative care workers would benefit from guidance to provide for the needs of persons with an ID. All staff caring for persons with an ID can benefit from education and training in palliative and end-of-life care (Botsford and King 2005).

A dilemma exists for health care professionals as to whether they should formulate policies and services separately for older persons with ID, or whether the needs of this cohort are best met by generic services for older people (Jenkins 2000). Hubert and Hollins (2000) suggest that staff working in the ID sector may not be conversant with the care needs of older people, and vice versa. A European manifesto incorporates best practice in health care for persons with an ID. The manifesto recommends the following: greater access and availability to health services; better competencies for health professionals, educators and researchers; a multidisciplinary approach; specialist services; and proactive health promotion (Meijer et al. 2004).

People with an ID experience similar challenges as the rest of the population. Unfortunately, they may have to struggle with a disabling world, and they are vulnerable. Their end-of-life needs may not be met. For that reason, the judicious introduction of multidisciplinary proficiency is vital to the palliative care of persons with an ID (Jones 2003).


Once a diagnosis has been established, gaining access to suitable treatment may be challenging. Trained carers working in ID services may not be completely au fait with the concept of palliative care (Read and Elliott 2006). Despite empirical evidence of high health needs, time spent by persons with an ID in a general hospital is shorter for similar procedures when compared to persons without an ID (Morgan et al. 2000). It has been implied, but remains unverified, that persons with an ID are regularly diagnosed very late in their illness. This may partly explain the low levels of access to palliative care for this cohort (Tuffrey.Wijne et al. 2008).

Many ID services are underpinned by the notion of assisted living, concentrating on the future and living in good health, not on death and dying. Many HSPs have policies on how staff should respond when a client dies. But strikingly, no policiesare readily available on what staff must do if a client is given a life.threatening diagnosis. The intellectual disability sector is ill.prepared for death and dying, which diminishes its credibility of holding the mantle of care from the cradle to the grave (Todd 2004).

Treatment and prognosis

Palliative care professionals may lack familiarity with persons with ID and unconsciously maintain an array of negative attitudes based on fear and the stigma allied with vulnerable groups (Read, Jackson and Cartlidge 2007). These taxing considerations may impede an important diagnosis, reduce treatment options, (Hogg and Tuffrey-Wijne 2008) and often result in a poor prognosis.

Although physicians are more likely to prescribe pain medications for palliative care compared to any other care, they still hesitate to prescribe for persons who may not be able to verbalise their pain and comfort levels, within the terms of conventional assessment tools (Botsford and King 2005). Being keenly alert to symptom management is an integral part of quality palliative care. It also enhances an individual’s dignity (Chochinov 2002). In light of the number of deaths that inevitably occur within services providing care for those with an ID, a day of remembrance would mean a great deal to relatives, peers and staff (Todd 2004).


To facilitate aging in place, the care passage of a person with an intellectual disability should be underpinned by a combination of a palliative care approach and a Person-centred planning approach dependent on individual requirements. These requirements include awareness of ill health, diagnosis, treatment and prognosis. The onus is on health professionals and Health Service Providers to provide appropriate standards of service and practice to those in their care (Jenkins and Davies 2006). Intellectual disability nurses are in a leading role to advance good quality palliative care nursing for people with an ID, owing to the different areas in which they are employed (Jones 2003). The time is fitting for intellectual disability and palliative care organisations to join together and look forward to the future (Medley 2006). Ng and Li (2003) query whether sufficient emphasis has been placed in the training curriculum for nurses in intellectual disabilities to gain the knowledge and special ability to provide for the needs of the terminally ill and an aging intellectually disabled population. Correspondingly, Piachaud (2002) contends that more time spent with persons with an ID during medical training may enhance a doctor’s ability to relate to this cohort. Research that empowers persons with an ID themselves to narrate their stories of loss, bereavement and dying is discerning, potent and essential in establishing their palliative care needs and future service and research development (Tuffrey.Wijne and Davies 2006). If the lives of persons with an ID are to matter, then unquestionably their deaths must also be acknowledged (Todd 2003).

Intellectual disability services should familiarise themselves with the location and range of palliative care services. Equally, specialist palliative care services need to be mindful of local intellectual disability services (Todd 2005). Palliative care professionals can have a central role to play in the care of persons with an ID. However, the degree of ID may be problematic in accurately assessing the person’s symptoms. Thus, it is crucial that carers are included in the assessment. They should be asked to continue to report any behavioural changes and to assist in interpreting verbal and non-verbal communications. In order to support carers in this regard, they need to be aware of the expected signs and symptoms, and the expected path of the illness (Tuffrey-.Wijne 2002). Delivering change in any area is dependent upon people taking leadership and accepting responsibility. Moreover, they must appraise and confront the way things have ‘always been done’ (Health Service Executive and Irish Hospice Foundation 2008). Generally the resources are not on hand to facilitate a person with an ID to die in their place of choice. In the longer term, we need to guarantee that such resources are available. This necessitates both a policy.and a financial commitment. In the interim, it behoves us to investigate all the factors that are relevant when considering where someone with an ID should be cared for at the end of their life. We must not always assume that ‘we know best’ (Tuffrey-Wijne 2009).


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