Health Care Reform and Long-term Care

A three-part series on the reality of long-term care and how it’s playing out in health care reform

Given the strong probability of some kind of health care reform, I read as much as I can about proposals that could impact the provision of long-term care services. Billions of dollars are at stake, and the politically influential have kicked into high gear. Real concern should be generated when policy makers, politicians, and political idealists, who have little personal experience with family caregiving, assume authority over the structure, payment, and delivery of long-term care.

The intent of end-of-life planning mangled beyond recognition

The Senate recently dropped provisions that would have covered end-of-life counseling from its version of health care reform. As a result, older adults and their families may very well miss out on critical information necessary for making good end-of-life decisions.

The provisions would have paid physicians to offer consultation about end-of-life care, setting up a living will and durable power of attorney, and availability of hospice and palliative care. According to Senator Charles Grassley (R-Iowa), a key architect of Senate health care reform, "The intention of the members of Congress was to give people more information so that they could handle issues of end-of-life care when they're ready on their own terms. It wasn't forcing anybody to do anything."

In real life, most people get health and long-term care information from their physicians. Regrettably, most of those physicians are not trained in geriatrics. In fact, the number of geriatricians, relative to the demand for geriatric-specialty services, is painfully limited. Many doctors simply do not know much about health care for old people. Overmedication (often leading to confusion and falls) and misdiagnosis are regular occurrences. Any adult day care health nurse can recite a litany of common physician errors.

So, how do people learn about end-of-life options? Depends. Some hospitals and rehabilitation facilities require that patients have a living will on file. They don’t provide support to develop the document—they just require it. Good attorneys will include living will and power of attorney documents when they draft a personal will, and some senior centers offer development of living wills as part of their service package. Largely, however, end-of-life planning is not easily come by, which is why the provision was included in health care reform.

I have never talked to anyone who did not profoundly appreciate end-of-life care through hospice. The experience of caring for a dying parent can be overwhelming for family members. According to the American Cancer Society, “The goal of hospice is to enable patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones.” Hospice can help ensure a good death, and who would not want that? One problem: hospice is not started soon enough. Fear, guilt, and denial often overshadow reason and compassion.

According to the Wall Street Journal (August 13, 2009, "End-of-Life Provision Loses Favor"), “About 5% of Medicare beneficiaries die each year, according to a 2001 study published in Health Affairs. But spending during the last year of life accounted for 27.4% of total Medicare spending. The Urban Institute, a nonpartisan research center, found that the government could save $90.8 billion over 10 years by better managing end-of-life care.”

Unfortunately, the proposed end-of-life planning provision was coupled with talk about cost savings, which opened the debate door to the misinformed and the ill intended.

Former Governor Sarah Palin characterized the provision as setting up “death camps.” Others called them “death panels,” while still others interpreted the provision as mandatory euthanasia. Charmaine Yoest, blogging for Americans United for Life, writes that end-of-life counseling might put pressure on patients to make decisions intended to conserve costs. Yoest also fears that physician-assisted suicide might be discussed. Since physician-assisted suicide (death with dignity) is legal in Washington and Oregon, I would hope a discussion of that option be included. I’m always amused when the religious right opposes legislation, citing fear of government intervention into private lives, until it’s their view of morality that’s involved. Then government intervention is okay.

In objecting to the provision, Peter Roff writes (U.S. News & World Report, August 13, 2009, "Score One for Sarah Palin on the Healthcare Reform Death Panels"), “the measure would recruit doctors to sell the elderly on living wills, hospice care and their associated providers, professions and organizations.”

Yes, Mr. Roff, that’s the point—and that’s exactly what’s needed.

By Sara Myers
A Good Enough Daughter Blog