These are not typical situations-but they do occur. And they may even be increasingly common. We don't really know.
What can we, as advocates for better end-of-life care, say? In each case, we work to get authoritative information to callers. For some family members, our new book, Handbook for Mortals, is a godsend - we have even faxed frantic and overwhelmed people whole chapters! Telling the second woman how to find the hospice medical director and clinical director probably helped. But more is needed to improve care - and to make situations like these the basis for real change.
We need to learn how to help these stressed and worried people remember and use these experiences to press for systems and policies to change. Our tendency has been to see such shortcomings as mere anecdotes–rather than to see the general patterns they describe, or to remember them.
What might ABCD staff and members be able to do together if we could magnify the effort to cope with these situations by making them "bigger"? For example, perhaps cases like the first could routinely bring on a call from ABCD to the home care agency requesting remedial education, making it available, and seeking a response. Or, the second woman's hospice could get a call from ABCD or from another professional organization asking questions and reporting the answer somewhere (e.g., the local medical society).
The last situation, the doctor who has lost his program and its mission, demands even stronger measures. Perhaps we should attempt to make news of such stories? Perhaps we should call on for-profit hospices to develop a method to police such activities? Or seek to have profits reported publicly?
What do our readers and members think? What kinds of problems do you see, and how do you respond? What would you want us to do? If we are to man these barricades, the demand could well be overwhelming for a while. We will need your support and your good ideas. Please send both to ABCD, either to [email protected], or to our Inter-Institutional Discussion Board, which can be reached from the ABCD web site at www.abcd-caring.com. The board focuses on policy and improvement; developing a strategy for responding to such pleas for help is an important task for advocates in this field.
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