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 self-care 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.
Controversy Over Tube Feeding in End-Stage Dementia
Watching someone you know and care for who has lost the ability to eat or drink is difficult. Staff members supporting persons with intellectual disabilities and Alzheimer's dementia have described feelings of guilt and remorse when faced with this concern (Service, 2002). Family and other key workers are often challenged and confused between issues of preventing suffering and prolonging life. There is the belief that “something must be done” and lack of intervention is often equated with abandonment and lack of caring and neglect. Indeed, in the generic literature fear of litigation (over not doing “anything”) has been reported as an additional incentive for feeding tube use (Hoefler, 2000). Yet, there is evidence that feeding and hydration issues are different for persons with end-stage Alzheimer's dementia in need of end-of-life care as compared to others (e.g., those recovering from illness for whom artificial nutrition and hydration is recommended). Hunger is reported to largely disappear, and food and fluids are to be offered for comfort and to reduce thirst rather than to hydrate and respond to hunger (for a review of relevant research see American Dietetic Association, 2002; Hoefler, 2000), obviating the need for interventions such as feeding tubes.
There is a frequently held belief that feeding tubes will significantly promote comfort for the individual with Alzheimer's dementia and prevent suffering, reduce the risk of aspiration pneumonia and infections, maintain skin integrity, and prevent the person from “starving to death.” Despite these reasons often being given as the basis for tube feeding, there are little data to support such efficacy of tube feeding for persons with advanced Alzheimer's dementia (in the general population). Instead, there are reports of increases in wound infections (where tubes have been inserted), in aspiration pneumonia and decubitis ulcers, and in the use of restraints (to prevent the individual from pulling the tube out). Most researchers have concluded that tube feeding is seldom beneficial to persons in the final stages of Alzheimer's dementia (see, for example, Finucane, Christmas, & Travis, 1999; Hoefler, 2000). These issues have yet to be similarly investigated for persons with intellectual disabilities and Alzheimer's dementia, but at the very least decision-making under pressure to “do something” would be better informed if findings from the generic Alzheimer's dementia care field were more widely known by providers, staff, and families of individuals with intellectual disabilities.
Risks for Persons With Intellectual Disabilities
There has been a considerable increase in the use of feeding tubes in young children with significant disabilities for whom oral feeding is unsafe, inadequate, or particularly time consuming. Several researchers have documented apparently resultant increases in quality of life for the child and for the caregiver (for a review, see Trier & Thomas, 1998). As has already been noted, the nutritional issues in end-stage Alzheimer's dementia are very different. However, success with use of feeding tubes for younger persons with intellectual disabilities may encourage their use later in life. Also, as Alzheimer's dementia and co-morbid health conditions advance, the person with intellectual disabilities is increasingly prone to hospitalization. Here, given pre-existing intellectual disability-related difficulties, some persons in this population are likely to be rated as candidates for a feeding tube or other assistance on standard protocols for measuring eating and nutrition-related difficulties, which evokes questions about needing help, presence of spillage while eating, and refusals to eat or swallow (see, for example, the Edinburgh Feeding Evaluation in elderly people with dementia, Watson, 1996). Similarly, relatively small increases in difficulty for a person with intellectual disabilities as a result of Alzheimer's dementia may also result in a more rapid recommendation for tube feeding. Finally, there are data suggesting that reimbursement for care may increase when tube feeding replaces staff-supported feeding and that in situations with staff vacancies and staff turnover, the extra time needed to continue staff-supported feeding may encourage recommendations for tube feeding (Mitchell, Buchanan, Littlehale, & Hamel, 2003). These are areas where advocates, staff, families, and providers must be especially vigilant to ward against overreliance on tube feeding when more effective, dignified, and normal—even if time-consuming—approaches to nutrition may still be still possible.
Need for Planning
In all of this discussion, we have not yet heard the voice of the persons with intellectual disabilities and Alzheimer's dementia. For some, expression of their wishes has always been difficult; for all, such expression in the end stage of Alzheimer's dementia will be impossible. For families, valued partners, and surrogate decision-makers/guardians, absence of information and rushed decisions at emotionally charged moments will likely not support decisions made in the best interest of the person with Alzheimer's dementia or that adhere to the person's own wishes. The development of materials to support informed decisions and the development of advance directives and other tools are a critical concern. For providers and policymakers, there must also be a concern not to create financial and other incentives that intentionally or unintentionally encourage particular decisions around feeding tube use that may not always best meet the needs of the person with Alzheimer's dementia.
Need for Research
There is also a pressing need for research in this area given that use of feeding-tube decisions for persons with intellectual disabilities are likely to become more prevalent in the years ahead. Already there are anecdotal reports of persons in end-stage Alzheimer's dementia being placed on feeding tubes (see, for example, Service, 2002). As part of a systematic study of care needs of persons with Down syndrome and Alzheimer's dementia, McCarron (2002) found that 36% of the sample with end-stage Alzheimer's dementia was on feeding tubes. This compares to findings of Mitchell et al. (2003), who reported that one third of persons in United States nursing homes (most of whom had Alzheimer's dementia) were on feeding tubes. We need to know more about the use of feeding tubes with persons who have intellectual disability, the reasons for the use, the relationship of use to outcomes and to the end-of-life desires of the person with intellectual disabilities, and the impact on their quality of life.
Principles to Guide Decision-Making
The development of related research, the documentation of the use and outcomes of tube feeding, and efforts to listen to the person with intellectual disabilities and their surrogate decision-makers will help to guide the development of standards and protocols for use of feeding tubes and other end-of-life issues. At the very least, decisions for persons with intellectual disabilities and Alzheimer's dementia must be based on the principles and related questions posed for the generic population of persons with Alzheimer's dementia (see Smith & Andrews, 2002).
Beneficence: How and by whom will determinations be made that recommended treatments using feeding tubes are likely to benefit the individual, and what expected outcomes will be specified to justify their use?
Nonmalfeasance: Recognizing that normally beneficial approaches may be burdens at the end-of-life, how will advocates avoid harm in the course of care by ensuring that treatments are not continued or initiated when they no longer represent a benefit?
Autonomy: How will the rights of persons with intellectual disabilities be respected and their prior directives followed (i.e., their own decisions made prior to onset of dementia), and how will surrogate's rights be equally respected?
Justice: How and by whom will resources be allocated to support helpful palliative care while ensuring the fair allocation of scarce health resources and avoiding offering futile treatments that may take resources from others?
Virtue: In decision-making about artificial nutrition and hydration and feeding tubes, what will be the standards that will ensure the honoring of trusting relationships, the promoting of honesty and confidentiality, and the genuine deliberating of alternatives?
The challenge in considering the use of artificial nutrition and hydration alternatives, such as tube feeding in persons with Alzheimer's dementia, is that their use is not so much about supporting persons in the acute phase of an illness or recovery as it is about contributing to promoting comfort and reducing distress in the last period of life.
Mary McCarron, PhD, Lecturer and Director of Research, School of Nursing and Midwifery, Trinity College, Dublin, Ireland, and Policy and Service Advisor on Dementia, Daughters of Charity. Philip McCallion, PhD (firstname.lastname@example.org). Professor and Director, Center for Excellence in Aging Services, University at Albany, Albany, NY 12222