End-of-Life Care Challenges for Persons With Intellectual Disability and Dementia: Making Decisions About Tube Feeding

Abstract

People with intellectual disabilities are living longer, and greater numbers of individuals are surviving into the age of risk where they are developing Alzheimer’s dementia. This is particularly true for older people with Down syndrome, who are uniquely at risk of developing Alzheimer’s dementia and who account for about one third of all people with intellectual disabilities and Alzheimer’s dementia. There is a growing realization of the increased care needs for individuals with intellectual disabilities and Alzheimer’s dementia across the continuum of dementia (McCarron, Gill, Lawlor, & Begley, 2002). Dementia is a terminal illness, and there are unique care issues around the end stage of this disorder (McCallion & McCarron, 2004). Researchers have confirmed that in end-stage dementia, a terminal picture includes severe intellectual deterioration, marked personality and mood changes, loss of sphincter control, seizure activity, immobility with hypertonia, and complete loss of selfcare skills (see, for example, Cosgrave, Tyrrell, McCarron, Gill, & Lawlor, 2000; McCarron, Gill, McCallion, & Begley, 2005). The feeding difficulties/challenges experienced as part of end-stage dementia of persons with intellectual disabilities mirror those described in the generic care literature for persons with Alzheimer’s dementia (Biernacki & Barratt, 2001; Norberg et al., 1994). Lack of ability to self-feed, difficulty holding food in mouth, chewing and swallowing concerns, agitation and distress, spitting, and food inhalation/aspiration culminate in stress for the person, the family, and direct care workers (McCarron et al., 2002). As happens for the generic population of persons with Alzheimer’s dementia, staff, family, and clinicians are often attracted to what they perceive as benefits to artificial nutrition and hydration, in particular the use of feeding tubes. Making decisions regarding end-of-life care and life-sustaining treatments, such as feeding tubes for persons with intellectual disabilities and Alzheimer’s dementia, present formidable clinical and care challenges and given the changing demographics is likely to become an increasingly important issue in the field as the prevalence of Alzheimer’s dementia in persons with intellectual disabilities rises. There are divergent views regarding the appropriateness of tube feeding for the general population of individuals with Alzheimer’s dementia. The decision to implement tube feeding is complex and further complicated in persons with intellectual disabilities and Alzheimer’s dementia, a population whose decision-making capacity is often already compromised. End-stage dementia and related end-of-life decision-making is an emotional and value-laden time. There are the influences of cultural and religious values of the person, the family, and, at times, care staff; the impact of emotions and relationship bonds and conflicts; limited ability to know and understand the wishes of the person, particularly if this has not been discussed earlier in the disease process; and a lack of undisputed outcome data to support or discourage use of feeding tubes (or alternative approaches) and other life-sustaining treatments. Work is needed on understanding the utility of tube feeding for persons with intellectual disabilities, where it fits within the continuum of palliative care, and how best to present and discuss these issues with individuals who have intellectual disabilities and Alzheimer’s dementia, family members, and key workers. As clinicians and researchers, we have drawn upon the generic care literature on benefits and burdens of tube feeding and related ethical considerations to help frame some key challenges in this difficult decision-making process for end-of-life care for persons with intellectual disabilities and Alzheimer’s dementia.