End of Life Spending

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National Issues Forums Institute (NIFI) director Chris Satullo suggested the following as a possible issue for development into a deliberative framework.  We welcome your comments and additional information about this issue.

The issue I'd recommend could be named, provocatively, "Do we have a duty to die?"

It's generally agreed that one of the main drivers of government spending and deficits is health care.

It's generally agreed that the most worrisome drivers of government health care spending are Medicare and Medicaid.

A little-recognized diver of Medicaid spending is skilled nursing care for the elderly, infirm poor (and, after some dubious finagling, the middle-class elderly).

A well-known driver of Medicare spending is the heroic, costly and usually futile care given to people who are near the end of life.

It is not unfair to suggest that our health care system has a bias for such futile spending on the very sick and very elderly over proper prenatal and early childhood care, over preventive, holistic care for adults, and for long-term care for those with chronic diseases and disabilities.

I have yet to speak to a public health or health economics expert who does not take the above statements as givens of the status quo.

But I have also never spoken to one who has any optimism that the American public is ready for the conversations, judgments and adjustments that would be required to shift health spending from end-of-life futility to public health logic.   Few have either the deliberative skills or the patience to figure out how to frame the issue for public consumption.

The experience of the Obama health care overhaul - and in particular the demagogic storm over "death panels" - has strongly reinforced the experts' pessimism.    That brouhaha has pretty much turned this issue into a "third rail" of inside the Beltway politics.

A deep cause of this syndrome is the American reluctance to come to terms with a brutal fact: We all die.

We tend to ask the health care system and government to spend enormous sums to sustain the pretense that either our loved ones or ourselves can be exempted from mortality, or at the least guaranteed a quiet death in our sleep at age 99.

So we do not have the conversations with family members that we should have, to give them clear guidance if we are incapacitated by a life-threatening situation.  We do not prepare living wills or final directives. When it comes to other loved ones, we insist that medicine spend enormous sums on the off chance that a miracle will happen.

As a result of our clinging to pretense, the medical profession does not train or gird itself to have the kind of honest conversations with patients and families that could lead to a good, or at least better, death free of tubes, machines and unnecessary spending.  It shrugs, orders procedures and tests, and inflates the health care budget to no good end.

This is an issue that involves technology and finances, but that is not really technical or fiscal. It is purely about values, about family dialogue and community will, about professional values and individual understanding.

It's a great and urgent topic for deliberation.

Among those I've discussed these issues with are Art Caplan, head of bioethics at Penn, David Grande, a health economist and doctor at Penn, David Nash, death of public health at Thomas Jefferson University, Rob Field, a health economist at Drexel, Harris Sokoloff of the Penn Project for Civic Engagement, and my wife, who is an oncology social worker who has guided many families through end of life situations.