Niamh McEnerney, member of the Dublin Mid Leinster (DML) End-of-Life Sub-Group, shares her findings from her research, which asked the question: What are the end-of-life needs of Adults with Intellectual Disability?
HIQA have published standards relating to the ‘end of life’ care for people with disabilities.
The findings were grouped into four main categories;
Ireland’s independent health safety, quality and accountability regulatory body, The Health Information & Quality Authority (HIQA) published the National Standards for Residential Services for Children and Adults with Disabilities in 2013. Within these standards, the need for appropriate end-of-life care for adults with Intellectual Disability (ID) was highlighted.
‘People with life-threatening or life-limiting conditions and their families have
access to specialist palliative and end-of-life care, receive care and support,
which meets their physical, emotional, social and spiritual needs and respects
Disability services within the DML region voiced their need for support in meeting these challenging end-of-life needs, and asked for the sharing of practices, experiences and documentation to help improve care in this area. With this goal in mind, the DML End-of-Life Sub-Group set about compiling a guideline to meet those needs. To support the development, it was important firstly to clarify the actual needs of adults with Intellectual Disability at end-of life. This article focuses on the findings of that research.
The main findings of the systematic review originated from the United Kingdom, United States, Netherlands, Canada and Ireland and came from three main perspectives; those of adults with ID, of their families and of healthcare professionals. The findings were then grouped into four core categories; physical, emotional, social and spiritual, and themes were identified.
Symptom Control and Management
The first need related to concern about physical comfort and symptom management at end-of-life and was reported by adults with ID (Tuffrey et al., 2007) and care staff (Weise et al., 2012; Todd, 2013; Kirdendall and Waldrop, 2013) in a number of studies. To achieve good symptom management, the need to know adults’ ‘habits and behaviours’ (Li and NG, 2008) was seen as important, with a person-centred approach being central to its achievement.
Medical Decision Making
Research from the Netherlands agreed with a person-centred approach, with medical doctors stating that more involvement with adults with ID was needed when discussing end-of-life issues. Regular meetings, with clearly-defined roles and responsibilities for all involved in end-of-life care, was stated as an essential requirement (Wagemans et al.2013).
The quality of relationships, the need to allow expression of individuality and the desire to address grief and bereavement were emotional needs identified by healthcare professionals, for adults with ID at end-of-life (Kirkendall and Waldrop, 2013). The need for individuality was reflected by Clute and Kobayashi (2012), who noted that adults with ID felt they were ‘invisible’. It was suggested that if emotional well-being is to be promoted, it needs to be strongly linked with a clear communication plan that encourages open dialogue with the adult, family and healthcare professionals involved in providing support and care. Challenging issues relating to ‘protecting’ adults from difficult decisions and not disclosing information, was rated as a significant concern leading to emotional distress. In addition, supporting healthcare professionals to assist adults in recognising loss and grief was listed as a further area requiring appropriate training.
The theme of communication continued when linked with social aspects of care, with the need for clear communication at end-of-life being highlighted by a number of studies (Grossberg et al., 2013). While each adult has different needs, issues in relation to disclosure of diagnosis and prognosis were noted to need sensitive discussion. Clute and Kobayashi (2012) found the challenge of families and healthcare professionals ‘protecting’ adults, raising the issue of non-disclosure of diagnosis or prognosis. This was seen to occur for a variety of reasons: the desire to prevent distress; that it was too difficult for the bearer of the bad news, or that the bearer of bad news lacked the relevant knowledge or skills to disclose the information. Further challenges can also add complexity to disclosure, such as the inability of the adult to understand, a lack of sense of time on the part of the adult, and the possibility of conflicting views of the stakeholders involved (Tuffrey-Winje et al., 2013a). It was recognised that adults have a right to know their diagnosis and prognosis, and that this knowledge helps the person cope and prepare for end-of-life. The need to involve adults was necessary if his/her last wishes were to be known and observed (Tuffney-Wijne, 2003; Tuffney-Wijne et al., 2007b).
Rights and Choices
In addition to the right to know and make decisions, the right to choose the location of death is also important for adults with ID. The findings reported by a Canadian study suggested that more collaborative work between disability and end-of-life services, in order to provide inclusive end-of-life care, was central to the achievement of success in these services (Steinstra et al., 2012). The issue of choice of location at end-of-life is fragile and changeable; it has been noted that choices made were not always available or appropriate when end-of-life eventually occurred (Todd, 2004; Tuffrey-Wijne, 2007a). However, when asked directly, adults with ID stated clearly that family relationships, familiar environments and people were consistently important to them (Thompson, 2002).
Little is written about the social implications of end-of-life within the ID community, and the impact that end-of-life has on a social network (Tuffrey-Wijne et al., 2007b). Connections and networks, whether with family, friends or fellow residents, are immensely important for adults with ID. The necessity to maintain those connections, provide support and facilitate understanding, was demonstrated as being significant.
The absence of specific references in the literature to the spiritual needs of adults was apparent. Little evidence was found that healthcare professionals who cared for adults with ID talked about death and dying (Wise et al., 2013). The challenges for staff when discussing issues such as final wishes, ritual and remembrance, were noted as being complex and required healthcare professionals to have specific training (Dunkley and Sales, 2014). Botsford (2004) noted the exclusion of adults with ID from supportive rituals relating to end-of-life, and suggests that these rituals can be therapeutic and promote understanding, and therefore where appropriate they should be explored and encouraged.
Adults with ID at end-of-life have many similar needs to the general population. The need exists for good physical care, effective symptom management and clear communication. In addition, the presence of family and healthcare professionals who can provide emotional and spiritual support, ensures that adults with ID can meet their end-of-life goals. The specific challenges that can occur including those relating to capacity, lack of choice of location of care and lack of disclosure can be challenging, but these needs are not exclusive to this community.
If the principles of palliative and person-centred care are carried through to end-of-life, the physical, emotional, social and spiritual needs of adults with ID can be met, thus providing adults with dignity and compassion at end-of-life, and ensuring that a ‘good death’ is achieved.
Botsford, A. (2004) Status of End of Life Care in Organizations Providing Services for Older People with a Developmental Disability, American Association on Intellectual & Developmental Disabilities, 109 (5), 421-428.
Clute, M.A. and Kobayashi, R. (2012) Looking within and reaching out: bereavement counsellor perceptions of grieving adults with ID, American Journal Of Hospice & Palliative Medicine, Vol.29(8), 583-590-
Dunkley, S. and Sales, R. (2014) The challenges of providing care for people with intellectual disabilities: a literature review, International Journal of Palliative Nursing, 20(6), 279-284.
Grossberg, R.I., Blackford, M., Friebert, S., Benore, E. and Reed, M.D. (2013) Direct care staff and parents/’legal guardians’ perspectives on end-of-life care in a long term care facility for medically fragile and intellectually disabled pediatric and young adult residents, Palliative & supportive care, Vol.11(4), 307-14.
Health Information and Quality Authority (2013) National Standards for Residential Services for Children and Adults with Disabilities, Dublin, HIQA.
Kirdendall, A.N. and Waldrop, D. (2013) Staff perspectives on the provision of end-of-life care in a community residence for older adults with developmental disabilities, Journal of Palliative Medicine, 16 (9), 1121-1124.
Li, S. and Ng, J. (2008) End-of-Life care: nurses’ experiences in caring for dying patients with profound learning disabilities: a descriptive case study, Palliative Medicine, Vol.22(8), pp.949-955.
Stienstra, D., D’Aubin, A. and Derksen, J. (2012) Heightened vulnerabilities and better care for all: disability and end-of-life, Palliative and Supportive Care, 10, 17-26.
Todd, S. (2004) Death counts; the challenge of death and dying in learning disability services, Learning Disability Practice, 7(10), 12-15.
Todd, S. (2013) ‘Being there’: the experiences of staff in dealing with matters of dying and death in services for people with intellectual disabilities, Journal of Applied Research in Intellectual Disabilities, Vol.26(3), pp.215-230-
Thompson, D. (2002) “Well, We’ve All Got to Get Older Haven’t We? Reflections of Older People with Intellectual Disabilities on Aging and Change, Journal of Gerontological Social Work, 37(3/4), 7-25.
Tuffrey-Wijne, I. (2003) The palliative care needs of people with intellectual disabilities: a literature review, Palliative Medicine, 17, 55-62.
Tuffrey-Wijne, I., Bernal, J., Butler, G., Hollins, S. and Curfs (2007a) Using Nominal Group Technique to investigate the views of people with intellectual disability on end-of-life provision, Journal of Advanced Nursing, 58(1), 80-89.
Tuffrey-Wijne, I., Hogg, J. and Curfs, L. (2007b) End-of-Life and Palliative Care for People with Intellectual Disabilities Who have Cancer or Other Life-Limiting Illness: A Review of the Literature and Available Resources, Journal of Applied Research in Intellectual Disabilities, 20, 331-344.
Tuffrey-Wijne, I. (2009) The preferred place of care for people who are dying, Learning Disability Practice, 12(6), 16-21.
Tuffrey-Wijne, I., Giatras, N., Butler, G., Cresswell, A., Manners, P. and Bernal, J. (2013) Developing Guidelines for Disclosure or Non-Disclosure of Bad News around life-limiting illness and Death to People with Intellectual Disabilities, Journal of Applied Research in Intellectual Disabilities, 26, 231-242.
Wagemans, A., Van Schrojenstein Lantman-de-Valk. H.M.J., Tuffrey-Wijne, I., Widdershoven, G. and Crufs, L. (2010) End-of-Life decisions: an important theme in the care for people with intellectual disabilities, Journal of Intellectual Disability Research, 54(6), 516-524.Wagemans, A., Van Schrojenstein Lantman-de-Valk. H.M.J., Proot, I.M., Metsemakers, J., Tuffrey-Wijne, I., and Crufs, L.M.G (2013a) The factors affecting end-of-life decision-making by physicians of patients with Intellectual Disability in the Netherlands: a qualitative study, Journal of Intellectual Disability Research, 57(4), 380-389.
Wagemans, A., Van Schrojenstein Lantman-de-Valk. H.M.J., Proot, I.M., Metsemakers, J., Tuffrey-Wijne, I., and Crufs, L.M.G (2013b) End-of-Life decisions for people with intellectual disabilities, an interview study with patient representatives, Palliative Medicine, 27(8), 765-771.
Wiese, M., Standcliffe, R.J., Balandin, S, Howarth, G. and Dew, A. (2012) End-of-Life care and dying: issues raised by staff supporting older people with intellectual disability in community living services, Journal of Applied Research in Intellectual Disabilities, 25, 571-583.
Wiese, M., Standcliffe, R.J., Dew, A., Balandin, S. and Howarth, G. (2013) What is talked about? Community living staff experiences of talking with older people with intellectual disability about dying and death, Journal of Intellectual Disability Research, DOI: 10-1111/jir.12065, 1-12.
Further articles of interest
Irish Hospice Foundation (2013) Competence and Compassion, End-of-Life Care Map, Hospital Friendly Hospitals Programme (Accessed on line: http://hospicefoundation.ie/wp-content/uploads/2013/04/End-of-Life-Care-Map-2013-version.pdf (24th November 2014)).
National Federation of Voluntary Bodies (2007) Informing Families of their Child’s Disability, National Best Practice Guidelines, Consultation and Research Report (Accessed on line 8th July 2014) http://www.informingfamilies.ie/_fileupload/Informing%20Families%20Consultation%20and%20Research%20Report.pdf.
Office of the Ombudsman (2014) A Good Death – A reflection on Ombudsman complaints about End-of-Life Care in Irish Hospitals, (Accessed on line: 29th June 2014 http://hospicefoundation.ie/wp-content/uploads/2014/06/A-Good-Death-Report-by-office-of-the-Ombudsman.pdf )).
United Nations (2006) UN convention on the rights of persons with disabilities. Geneva, United Nations.
Weafer, J. (2009) A Qualitative Study of Public Perceptions of End-of-Life Care. Dublin: The Irish Hospice Foundation.
Weafer, J., McCarthy, J. and Loughrey. M. (2009) Exploring Death and Dying: the views of the Irish public. Dublin: The Irish Hospice Foundation.