On July 30, 1965, when President Lyndon B. Johnson signed the bill that created Medicare, he outlined an ethical vision for the nation’s obligations to its older citizens. “No longer will older Americans be denied the healing miracle of modern medicine,” he said. “No longer will illness crush and destroy the savings that they have carefully put away over a lifetime so that they might enjoy dignity in their later years. No longer will young families see their own incomes, and their own hopes, eaten away simply because they are carrying out their deep moral obligations to their parents, and their uncles, and their aunts.”
That was then. Remember that, in 1965, 19 million Americans 65 years and older were eligible for Medicare. Life expectancy for men was only 66.8 years and, for women, 73.7 years.
This is now. Almost 44 million people are 65 and older. Women who reach the age of 65 now have a life expectancy of 20.4 more years; for men, it’s 17.8 more. That’s a boon to the healthy and well-off, but a challenge for those who are sick and poor.
One factor has remained constant over the years: most family members continue to feel a moral obligation to care for their parents, aunts, uncles, grandparents, siblings, friends, and others to whom they have a deep commitment. Medicare was enacted after a long political struggle partly on the basis that it would help not only older people but also their families by removing the financial burden of medical care. The reality, however, is that individuals and families still suffer under the financial weight of medical bills and the costs of unreimbursed care. While Medicare pays most of the bills for hospital stays and physician visits, as well as limited home care and rehabilitation services, it does not pay for long-term care in a nursing home or long-term services and supports in the community. Medicaid pays for long-term care, which is frequently what older people need most, but there are stringent income and asset eligibility criteria. This is a “safety net,” to be sure, but only for some, and it comes with strings attached.
Unpaid family caregivers provide an estimated 80% to 90% of long-term care outside of nursing homes or medical facilities. And they do so while they maintain full- or part-time jobs; care for other members of their families; and pay out-of-pocket for the many deductibles, copays, and items that insurance does not cover. Family caregivers provide an estimated $375 billion worth of care each year, but, because it is unpaid care, it is largely ignored in economic calculations of the health care enterprise.
Just as significantly, family caregivers have become unpaid and untrained lay nurses, routinely providing complex care such as medication management, infusions, and injections; wound care; monitoring of medical equipment; and other tasks. An AARP Public Policy Institute/United Hospital Fund national survey of family caregivers found that 46% were performing one or more of these tasks, in addition to the more traditional help with activities of daily living, such as bathing and dressing, and instrumental activities of daily living, such as shopping and transportation. And fully 61% said that they learned on their own how to do these demanding tasks. Most do not have paid help from nurses or home health aides. They are, as the title of the report suggests, “home alone.”
American society is a mass of contradictions; when a natural or manmade disaster occurs, at home or abroad, Americans give generously in time and money to help those who have been affected. Volunteers support many important community services. Yet proposals to spend taxpayer money on services to help people who are poor, hungry, homeless, or just frail and elderly are resisted vigorously. Americans value self-sufficiency and mainly see the meeting of needs as a personal responsibility, not a collective one.
Despite a frequently negative view of older people, let any politician or commentator suggest that doctors should discuss end-of-life choices with their elderly patients, and there will be an outcry against so-called “death panels” bent on “killing Granny.” Yet proposals for more services for Granny and her family caregivers are voted down because “Granny should have saved her pennies for long-term care” or “Taking care of Granny is the family’s responsibility.”
If we are a truly democratic and humane society, we are all responsible for everyone’s Granny. Individuals should be given affordable options to plan and save for their future care needs without becoming impoverished; families should be trained and supported in their willingness to provide care but not coerced to take on that role; professionals should recognize the individuality and preferences of their older patients and not be pressured to base decisions on the financial interests of their institutions. Finally, responsibility for shouldering the cost of care should be shared between private and public sources.
The Affordable Care Act, with all its problems and limitations, took up the fundamental problem of access to health care. But we need to do more. Our health care and long-term care systems need to be integrated and updated in a way that both recognizes the vision of Medicare at its inception and the real world we live in today. This is as much an ethical imperative as the passage of Medicare was in 1965.
Carol Levine, 79, is director of the Families and Health Care Project of the United Hospital Fund and a Hastings Center Fellow. She was awarded a MacArthur Foundation Fellowship in 1993 for her work in AIDS policy and ethics. A longer version of this article originally appeared in the American Medical Association’s Virtual Mentor.