The Long View of Long‐Term Care: Our Personal Take on Progress, Pitfalls, and Possibilities

Abstract

O ver the last 40 years, we have, separately and together, observed and contributed to the evolution of long-term care (LTC) policies and programs in the United States and around the world. We both graduated (Bob in medicine and Rosalie in social work) in 1965 when the Great Society programs (e.g., Medicare, Medicaid) were enacted. We watched (and abetted and bemoaned) the LTC growth spree and roller coaster ride, which has been exhilarating and daunting. To our quest of improving LTC, we brought Bob's perspective from geriatric medicine and health services research and Rosalie's from social work, bioethics, and the humanities.Along the way, organizations and government agencies have changed their names. Terminology for providers and recipients of LTC varies regularly, and LTC is now often dubbed long-term services and supports (LTSS), but the core definition remains constant. LTC (or LTSS) refers to personal care and related services for people with functional limitations due to disease and disability, including cognitive impairment. It is meant to allow its users to function as meaningfully as their disabilities allow in the most-integrated settings (formerly, least-restrictive settings). LTC should be judged according to psychological and social as well as physical and functional outcomes that address quality of life (QOL) and quality of care.On many points, we two agree. Fundamentally, we concur that LTC still needs improvement. Too much attention is placed on how to pay for LTC and too little on the type of LTC really desired. Although it may seem contradictory to labor for decades to improve a fundamentally flawed LTC system (some would say "nonsystem"), we agree that incremental improvements trump doing nothing while awaiting the Godot of major reform. The bedrock LTC occurs in people's own homes, and although some people at some time must relocate to group residential settings to receive necessary help and maximize functioning, we reject the goal of a one-way continuum of care; a panoply of choices is needed to respond to varying priorities of older adults.Furthermore, we believe that the distinction between institutional care and community care is anachronistic. Paying (through insurance or private means) for services only (leaving the room and board to be handled through income, however subsidized) would level the playing field.We feel strongly that the voice of the end users of LTC -whether called patients, recipients, beneficiaries, residents, clients, tenants, or consumers-needs to be heard. Likewise, the public needs to speak out to demand better LTC, and that contingent is not yet organized and activated.Structured multidimensional assessment is a core LTC building block but not an end in itself. Long ago, we saw the fallacy of being "all assessed with no place to go." We agree that health care (primary, acute, rehabilitation) is central, but the acute-care sector should not dominate life choices, such as where to live. Better information is needed to guide consumers and professionals in their deci...

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