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I have repeatedly stated that the “end of life” counseling controversy could be put to rest if only the bill were amended to make it clear that any counseling is voluntary—both as to physician and patient—and to ensure that the counseling would not be outcome directed, that is, aimed at “voluntary health care rationing” (to use a term coined by Dorinda Bordlee of the Bioethics Defense Fund).  Now, the syndicated columnist Kathleen Parker weighs in with the same advice, adding it some of the urgent reasons why the protection should be provide. From her column:

Given that “actionable medical orders” can be formulated from advance care consultations, the danger is that life-sustaining care would be precluded based on a checkmark on a document you signed five years earlier. It would be nice to think that everything goes as intended by patients, but we can safely assume that when human error collides with bureaucratic efficiency, nightmarish enforcement scenarios could ensue. Likelihoods morph into certainties when, as this bill sets out, primary physicians aren’t necessarily involved in the consultations. As proposed, a variety of health care practitioners would do.

Not least, the bill is an enabling document that leaves great discretion to the secretary of health and human services to develop guidelines that ultimately could change the character of what seems to be offered. In just one of dozens of examples, the bill leaves it to the secretary to develop “quality measures” on end-of- life care and advanced care planning. What might such quality measures look like? Who knows? But other documents floating around hint at what the secretary might consider. One is a 2008 Rand Corp. report, “Advance Directives and Advance Care Planning: Report to Congress,” which suggests mechanisms by which poor “advance care planning” could be viewed as “medical error,” otherwise known as malpractice...

When it takes 1,017 pages of mostly incomprehensible language to MapQuest the way we live (and die), people have a right to demand clarity. A simple amendment to HR 3200 would do much to cool tempers. All that’s needed is specific language saying that these end-of-life consultations are not mandatory — either for physicians or patients — and that there would be no penalty, either in coverage or compensation, for declining to participate. In the absence of such language, one may reasonably assume otherwise.

Exactly right. The bill might not create punishments, but the regulations that would be created in the shadows outside the direct democratic process could. So, the question is again on the table: This controversy has swirled for almost a month, and yet these simple, but needed, changes in the legislation have not been made.  I think we have the right to know why.

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