1.1 Who is frail and what characterizes that experience?


Oliver Wendell Holmes wrote of a “wonderful one-hoss shay” that was built so well that no part could break down ahead of the others. Rather, after one hundred years, “it all went to pieces all at once,—All at once and nothing first,—Just as bubbles do when they burst.”[14] Once, the commonplace way to come to the end of life was for something to break down in our bodies—injuries, heart attacks, infections, childbirth complications, cancers, and all the ordinary “causes of death.” Better health and health care has made these much less common, and more and more of us now get the opportunity to live into old age. However, we won’t quite end as the one-hoss shay did, with good health until the day that everything falls apart. Instead, we will have diminished reserve in many parts of our bodies and some parts which are really not functioning well but which are supported by some medication or treatment that keeps us going, until finally enough goes wrong that life ends. Basically, frailty is that period of living with the disabilities, chronic conditions, and diminished reserves associated with aging.

What is the experience of this part of life? As with most of life, experience varies. All too many people live with pain and other adverse symptoms and confront a health care system that is often frustrating, unreliable, and error-prone. Many elders also have financial problems, leading to compromising on food, housing, and medicines, and often to an unnecessarily early isolation from social groups and friends. However, many people also find remarkable opportunities for fulfillment and joy. This can be a time for reflecting on a life well-lived or fully atoned for, a time of completion and celebration of life’s projects, contemplation of life’s meaning, or for sharing insights from experience. In short, one hopes that the time before the end of life is meaningful, comfortable, and comforting, despite infirmities and losses.

Having most people achieve these goals, however, faces considerable challenges. Our everyday social arrangements have not planned for a large population with progressive and severe disabilities. Examples range from the lack of grab bars in bathrooms to the lack of arrangements for family members and other volunteers to provide support without losing their jobs. In addition, the culture is beset with pervasive ageism that counts old people with disabilities as embarrassing, burdensome, invisible, or worse. Many elders will have cognitive failure as a major part of their frailty course. One estimate is that between 18% and 38% of people living past 85 years old and between 28% and 44% of those 90 and older have significant cognitive failure.[15] Living with dementia and other brain malfunctions poses challenges for meaningfulness and comfort for the affected individuals and substantial burdens for their family caregivers. The financial costs and the social meanings of caregiving and other support for persons living with dementia pose challenges that the culture has not yet confronted.

What is it that frail elders most want? The best answer to this is always, “Ask the elder.” People become more and more differentiated from others over their lifetimes. Each of us arrives at old age with one-of-a-kind history, personal relationships, resources, and, most important, goals and priorities for the rest of life. An elderly person still responsible for a developmentally disabled son will often feel very protective of finances to assure that person’s future, while a similarly ill elderly person may have no one for whom to save money. One person can focus on eternity and salvation, while his neighbor has no religious inclination.

However, frail elderly people do have some priorities and concerns that are generally held, and that are substantially different from our priorities earlier in life. A mature realism about the limitations of medical care usually leads to abandoning illusions of cure and accommodating various disabilities and ongoing medical attention. As daily life becomes more challenging, having competent and compatible supportive assistance (by family, friends, or paid attendants) becomes newly important, along with having trustworthy professional advice on medical and financial matters. Reliability matters more and more—having the feeling that one is well-prepared and also has good back-up for unplanned changes in health or living arrangements. Most elders very much want to stay as independent as possible as long as possible. Most who still have any tangible assets would like to avoid impoverishment and possibly to leave a financial legacy for family or charity. Many worry about the changes in the lives of family members that caregiving entails, and they wish to avoid the isolation for patient and caregiver that often accompanies mobility problems, memory problems, and family caregiving. Frail elders are also acquainted with the fact of dying and ordinarily wish to make decisions that reflect an awareness of the limited time left; indeed, they often find it odd that physicians and family members dodge this obvious fact.[16] These considerations are generally muted earlier in life, when what one wanted from health care was mostly restoration of health, or prevention of health problems. So long as health could be restored, pursuing that possibility mostly overwhelmed everything else. The priorities and concerns of frail elders are different, and often are more complex and personal.

Widely available medical care has both helped to create the opportunity to grow old and has complicated pursuit of the goals of meaningfulness and comfort. Medical care in the U.S. has been quite aggressive in offering procedures, costly medications, and other treatments. While these have often been beneficial, sometimes they were not desired and might have been actually harmful to the frail elderly person.[17]

Where are the gaps? Medicare in the U.S. does not generally pay for care of teeth, hearing, eyesight, nutrition, feet, or mobility, all of which are centrally important to frail elderly people. Medicare also does not generally provide for personal care such as giving a bath or providing food with a spoon, nor does it provide support for a family caregiver. Elderly people and their families have to sort out how to get these other services and to manage and pay for them, until they are poor enough to get whatever services that their state provides through Medicaid. Some services are intended for broad support of all frail elders under federal initiatives (e.g., Meals on Wheels under the Older Americans Act) or state or local support, but these are routinely overbooked and appropriations for them are declining in the face of increasing demand.[18]

The services frail elders most need are hard to find, hard to pay for, hard to coordinate, difficult to evaluate, and generally frustrating—so they often are simply not provided. Various layers of coordinators, navigators, and managers have arisen to patch these problems, but their effectiveness is limited by the underlying chaos of a “system” that has no intrinsic coordination or management and that had developed to serve a very different, younger and less disabled, population.

The number of Americans over 85 will more than triple, from 5.8 million in 2012 to 18 million in 2050.[19] Quite simply, a phase of life that almost did not exist a century ago is now expectable: most of us will live to become old and frail before we die, and social arrangements have not caught up. We have all sorts of arrangements to accommodate raising children, from marriage to public schools, but we have had children to raise throughout history. Now we have a new phase of life, and we need to develop useful patterns, quickly.

[14] (Holmes 2009)

[15] (Gardner, Valcour and Yaffe 2013)

[16] (Ahalt, et al. 2012)

[17] (American Geriatrics Society Choosing Wisely Workgroup 2013)

[18] (United States Government Accountability Office, Older Americans Act: Updated Information on Unmet Need for Services 2015)

[19] (Ortman, Velkoff and Hogan 2014)

This is the online edition of MediCaring Communities

MediCaring Communities: Getting What We Want and Need in Frail Old Age at an Affordable Cost
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