Learning Objective #1: Describe the process for assisting family members as they decide whether or not to stop feeding through a long-term g-tube

Learning Objective #2: Describe the principles of supporting primary care staff members in group homes as they care for the individual throughout the dying process

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There are increasing numbers of individuals with intellectual disabilities (ID) who are living many years with artificial nutrition and hydration (ANH) through PEG tubes and thus many more health care providers are faced with the decision to withdraw ANH from these individuals when they become terminally ill. The field of ID has always emphasized advocacy, normalization and active treatment. These concepts do not necessarily conflict with hospice and palliative care but they do require the ID nurse to define the meaning of these concepts when determining how to best provide comfort and care to the dying individual who has ID and who has received ANH for many years. Staff and families usually have a very difficult time understanding current research on ANH and dying. Because the decision to withdraw ANH when there has been long term placement of a g-tube is a relatively recent phenomena, there is little research to guide the nurse as she attempts to assist the family in the decision process. This presentation will discuss three recent cases of individuals who had g-tube placement for more than five years and who had terminal illnesses. This presentation will discuss the principles of ethical decision making developed by Keenan and modified for the individual with ID. The principles of supporting staff who are required to change their focus from active treatment to hospice will be presented as well as the implications of withdrawal from ANH. The author will discuss the collaborative process developed in working with several state and local agencies. Discussion of these important issues needs to occur within the nursing profession as more and more of these events are occurring and will continue to occur. Families, indivduals and the health care workers who care for them deserve decisions made upon sound ethical, objective and well articulated premises.