In Being Mortal, Atul Gawande tells us: “A monumental transformation is occurring. In this country and across the globe, people increasingly have an alternative to withering in old age homes and dying in hospitals – and millions of them are seizing the opportunity. We’ve begun rejecting the institutional version of aging and death, but we’ve not yet established our new norm… With this new way, in which we together try to figure out how to face mortality and preserve the fiber of a meaningful life, with its loyalties and individuality, we are plodding novices. We are going through a societal learning curve, one person at a time…” (Page 193)
Sometimes a little historical perspective can be encouraging. The “societal learning curve” Atul Gawande alludes to is actually part of a larger learning process that has been going on for decades. This rejection of the institutional version of aging and death is simply the latest stage of an ongoing societal response to profound social, medical, and economic changes as they relate to issues of elder care. A brief outline of how we got to this stage might be useful.
Until the mid-20th Century, elder care was primarily a function of the extended family. Those who were unfortunate enough to have no family or who were abandoned by their family, were forced to live out their remaining days in what were known as “almshouses” or “poor houses.” These residential institutions were a kind of catch all, housing the frail, the infirmed, the insane, the developmentally disabled, or people who simply had nowhere else to live. They were universally underfunded, barely staffed, and had little public oversight. The living conditions were deplorable. Horror stories involving starvation, fatal neglect, exploitation, thievery, and outright torture were not uncommon.
With the restructuring of the social welfare system after WWII, the poor house became a thing of the past. In the 1950’s the federal government established a lending program that enabled entrepreneurs to build for-profit institutions designed specifically for elder care. These institutions were the first of what we would now recognize as the modern nursing home.
The 20th century also brought a significant demographic shift. Due to medical advances, improved sanitation, and infection control and treatment, people were living longer. In 1900, life expectancy in the United States was under 50. By 1960 that shot up to age 73 for women and a little less for men. The trend continues today and within thirty years we will have as many people over eighty as there are under five.
At the same time, social and economic changes resulted in an increasing number of women entering the workforce. By 1960, the percentage of the female population in the labor force had doubled since the turn of the century. This trend would continue through the second half of the 20th Century. Since women traditionally bore the burden of the majority of caregiving duties, families increasingly relied on institutions for the care of the elderly and disabled. In the early part of the 20th Century, 60 percent of those over age 65 resided with a family member. By 1960, that figure dropped to 25 percent. The fledgling nursing home system was being overwhelmed.
To meet the demand, the federal government stepped in with major legislation, the most significant being the establishment of the Medicare and Medicaid programs in the mid-60’s. With this stable source of funding, the number of nursing homes exploded. From 1965 to 1973 the number of beds doubled.
Living conditions varied in these new homes and too often they were substandard. Medicare and Medicaid specified they would only pay for care in facilities that met basic health and safety standards. However, policy makers knew that a good portion of these facilities could never hope to meet these standards and they feared there wouldn’t be enough homes to meet the demand. The result was a lenient regulatory posture allowing “substantial compliance.” That is, when it came to standards, “close enough” was good enough to keep you open.
During the 70’s and 80’s, the Long Term Care industry came under increasing public scrutiny. Congressional hearings citing conditions such as inadequate nutrition, dehydration, overdrugging, excessive use of physical restraints, failure to provide prescribed therapies and inattention to the psychosocial needs of nursing home residents, resulted in a public outcry for more strict enforcement of Medicare and Medicaid guidelines. The passage of the Omnibus Budget Reconciliation Act of 1987 (OBRA) established new guidelines for the use of physical and chemical restraints, created a nursing home resident bill of rights, and mandated quality assurance standards, established a standard survey process and mandated training and educational requirements.
While OBRA ’87 resulted in tangible improvements in the life of nursing home residents, a substantial proportion of the nation’s nursing homes were still being cited for inadequate care. In particular, the industry continued to be plagued with staffing problems, especially in direct care. In 2001, CMS reported that more than 90 percent of facilities nationwide did not have sufficient staff to meet the residents’ needs or to prevent avoidable harm. Most caregivers working in LTC today would agree that this problem persists in 2016.
In the last three decades there has been a number of efforts to provide an alternative to traditional institutional elder care. In the 90’s assisted living facilities began to emerge. Originally, these were intended to eliminate the need for nursing homes altogether by offering a smorgasbord of services in a setting that gave residents maximum freedom and autonomy regardless of their physical limitations. However, today the assisted living facility is generally regarded as simply an intermediate stage between independent living and life in a nursing home. Meanwhile, the emergence of programs such as the Eden Alternative, the Green House Project, Hospice Care, PACE, and other community based services are indicative of an ongoing societal effort to redefine elder care.
In less than seven decades, elder care has transformed from what was primarily a function of the extended family to a responsibility of the social welfare system. As societal institutions go, seventy years is not that long. If the 50’s style nursing homes could be considered the infancy of the modern Long Term Care system, then what we are experiencing now could rightly be thought of as its adolescence. If we are still grappling with problems of how to properly approach the issues of aging and elder care, it’s because we’re relatively new at it. And like a confused teenager with that “baby’s brain and old man’s heart,” we are still trying to find our way.
While we have to recognize the progress that has been made in Long Term Care, in terms of transforming the culture of aging and elder care in way that “preserves the fiber of a meaningful life,” we still have a long way to go. In fact, as Dr. Gawande’s “plodding novices,” we’re just getting started. I find that thought encouraging.