Health Policy and End of Life (EOL) in the United States

Employer-based health insurance, the foundation of patient coverage in the United States, has been in place since World War II. Strong efforts at health care reform have modified but not dislodged this system, even though it is acknowledged to be inefficient and exclusionary. The struggle for reform has not accounted for the baseline ideological values that have combined capitalism and rescue in a self-reinforcing institutional framework. The progressivists' assumption that it is only a matter of time before all causes of death are eliminated (Callahan, 2003) continues to drive investment, derailing any serious challenge for a more holistic approach to patient care that would reinforce palliative care and symptom control. Meanwhile, public health initiatives that promote a broad understanding of prevention and wellness rarely address EOL care and actual dying situations.

The portion of gross domestic product consumed by health care costs in the United States has grown from 7.2% in 1970 to 17.9% in 2010 (The Henry J. Kaiser Family Foundation, 2012a). It consumes an ever-greater portion of the GDP, especially compared to other industrialized countries, whose per capita health care costs are a fraction of those in the United States (The Henry J. Kaiser Family Foundation, 2012a). As costs rise, the beneficiaries reap the benefits. But as costs rise, less and less money is available
to spend on other national priorities, such as education and physical infrastructure. As these costs have been accelerating in the face of stagnant national income, the sustainability of the health care system is in question (Health Care Marketplace Project, 2006). As government programs strive to shift from a fee-for-service system to a value-based system with health care reform (Centers for Medicare and Medicaid Services, 2009; Smith, 2010), neither the hidden connection between fee for service and technological salvation nor the need to ground the transition in something more positive than the imminent death of capitalism is addressed.

The polarized U.S. political climate, a longstanding fear of “big government,” and mistrust of the medical system that dovetails with a lack of universal health care have together made rational political deliberation about EOL and/or health policy virtually impossible at the community, state, or federal levels. Underneath the conflict simmers the fear of death and a fear that reform would put the brakes on technological innovation. According to a Kaiser poll, 36% of the public in 2012 believed that the Affordable Care Act would “allow a government panel to make decisions about EOL care for people on Medicare” 3 years after the term “death panels” was debunked and a provision to reimburse physicians to engage in ACP was removed from the legislation (The Henry J. Kaiser Family Foundation, 2012b).

So far we have been discussing rescue as being underpinned by ideology, and indeed it is. An ideology of self-reliance and overcoming adversity assumes a linear view of progress and time (see Figure 19.2).

A more comprehensive approach to health care delivery will require a more multi-dimensional worldview along with attention to the financial realities the current system has created.

In fact, the nation's economic survival depends on a new EOL care conversation. U.S. health policy must be grounded in palliative care principles, which hold that symptom control for the seriously ill and dying must be universally available. This conversation is justified by focusing attention on “minor key” aspects of a view of human society that does not promote conquering death as a legitimate “end” of health care policy.

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