Ethical Dilemmas in Caregiving: A Guide for Staff Serving Adults with Mental Retardation

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Ethical Dilemmas in Caregiving: A Guide for Staff Serving Adults with Mental Retardation

They are people who have been labeled as "mentally retarded," and because of that label they have been set aside by our society. In one way or another they all are dependent on other people for help in their lives--although in this they are not tremendously different from the rest of us. Most of us need, want, and get some help in our day-to-day lives. On the other hand, there is no question that almost everyone who is labeled as mentally retarded has more difficulty than most people do in negotiating ordinary, everyday activities.

Those of us who work at jobs giving care to people who are labeled mentally retarded are often aware that we have to make difficult decisions, in situations that are rather unclear, about what is the "right" thing to do. Sometimes the best choice (or what seems to be the best choice) is blocked by policy, policy that was originally created to be even-handed and just. Sometimes there are simply disagreements about what choice would be best.

When we work in human service jobs we are often not consciously aware of these difficult choices. They add to the stress of our work. Sometimes a situation where the choice of right or best action is particularly difficult can leave us feeling ill at ease and discontent. If we don't look at these difficulties squarely, talk about them, realize why they are hard for us, then we make our own stress worse.

Some of these problems arise from difficulties that are entirely beyond our control: inadequate appropriations by the state legislature, for instance, or the attitudes of a client's family. But often times we encounter true ethical dilemmas: two or more choices leading to different actions, where each is recommended by some principle that is meant to guide the moral life. These ethical dilemmas are the kind of problem of choice that we want to examine in this manual.

For the purpose of clarity and order in this book, we have categorized ethical dilemmas along three separate dimensions. The first dimension we call "problems", life situations about which decisions need to be made. We call the second dimension "arenas" because it describes either the mechanisms by which we dramatize a decision-making process or the scenery that paints values onto the life problems we seek to solve. We name the third dimension "ethical principles" because it constitutes culturally and historically defined guidelines for a moral life. While these dimensions may seem artificially defined and separated. We offer these categories for the ease of teaching.

The ethical dilemmas that we have encountered, in the work of the Kennedy Aging Project (especially in our bimonthly Ethics Conferences) and in the Institutional Ethics Committee of the Walter E. Fernald State School, arise from the ordinary, everyday activities common to all adults. They are matter that most adults can take for granted. But if one has been called mentally retarded and confined to an institution, or receives services from a state department of mental retardation, then almost nothing in one's life can be taken for granted. …