In an extensive 2001 report entitled An Aging World, researchers for the U.S. Department of Health and Human Services reported: "Population aging represents, in one sense, a human success story; societies now have the luxury of aging. However, the steady, sustained growth of elderly populations also poses myriad challenges to policymakers in many societies."1 How are our policymakers doing at addressing those challenges?
This chapter opens by looking at where we live in the longer and longer twilights of our years. We shall see that the most fortunate among us will remain in our own homes, and especially if we are men, we will do so with our loving spouses at our sides. Others — most often women — will end up in the nursing homes that since World War II have replaced a family setting as the last residence of those of us who linger on into great old age. Like many aspects of elder care in our society, nursing homes have been insufficiently regulated. In 1980, Bruce C. Vladeck's Unloving Care: The Nursing Home Tragedy chronicled 50 years of government mismanagement of nursing homes. Vladeck called for a restructuring of the nursing home system and increased emphasis on home- based services for the independent elderly. We will explore the question: Are nursing homes really as bad as we've heard they are? And what are the alternatives? We also explore the painful topic of elder abuse.
For our third topic, cost of healthcare versus quality of life in the end, we will look at indicators of quality of life, what government has done to improve life for the elderly, and what seniors can do to help themselves. We then explore trends in end-of-life care — the hospice movement, pain control, and the growth of the patients' rights movement.
Throughout history, doctors have striven to prolong life. We look at the question: Has technology brought us to the point where the medical establishment is prolonging life to no good purpose? According to the National Institutes of Health: "Defining when these technologies and treatments shift from life saving interventions to burdensome and futile procedures that negatively impact quality of life has proved elusive."2
The case of Karen Ann Quinlan illustrates the type of ethical dilemma that has emerged in our era of modern medicine. Decisions about ending the lives of individuals for whom quality of life has ceased to be an issue used to be made quietly, privately. In Quinlan's case, in our new age of dying in institutions, a court of law got involved when permission to remove her from a respirator was sought and granted. So began an era of social, ethical, and legal controversy, and the phrases "the right to die" and "death with dignity" became part of the national vocabulary. Such phrases are used to describe a variety of endof-life decision-making issues. This chapter will look at two places that are on the vanguard of the physician-assisted suicide movement: Oregon and Holland.
Government and the medical establishment have been slow to respond to the issue of quality of care at the end of life. Medical schools are not graduating geriatricians and the National Institutes of Health (NIH) reports: "Results of two separate surveys found on average only 2% of the content of nursing … and medical … text books was relevant to end-of-life care."3 And what about cost of care at the end of life? In 2002 George P. Smith, II, B.S., J.D., wrote: "The government does arguably have a duty, based on a collective social obligation, to help people live out a natural life span. Yet, without a limit on investments into health care for the elderly, younger generations will suffer based on an inadequacy of available health care resources."4 Conservative John Hood grumps: "Statistical fact: America spends more on its old than on its children."5 Michael Fossel asks in Futurist: "What will happen when people can live on and on for centuries?"6 Who pays for care at the end of life? Who should pay for it?
We end the chapter on a lighter note with a look at how media images of senior citizens have evolved from "Help, I've fallen and I can't get up" to something more positive. Aging Baby Boomers will say that old age begins at 79 and would no doubt agree with the view expressed by the International Longevity Center: "It is not enough for people to live long. They should also live well."
Nursing Homes:
A government report asserted that abuse of residents is a major problem in nursing homes. The report analyzed data for a two-year period (1999-2000) showing that 10% of nursing homes "were cited for abuse violations that caused actual harm to residents or placed them in immediate jeopardy of death or serious injury." The percentage is increasing.
Reports From Residents:
An Atlanta Long Term Care ombudsman interviewed 80 residents in 23 Georgia nursing homes and elicited the information that 48% had experienced rough treatment and 44% experienced abuse.
Reports From Staff:
Nurse's aides make up about 85% of the staff in a nursing home. A 1993 survey of certified nursing attendants found that more than half (58%) had seen a staff member yell at a resident in anger. What little information is available on the causes of abuse and neglect in nursing homes suggests that the foremost reasons are staff shortages, staff burnout, and poor staff training. The chart shows that the median hourly earnings of Certified Nursing Assistants is $8.61. The title is usually applied to caregivers in a nursing home or hospital setting. This rather low wage may go some way toward explaining the staff contribution to the problem. The fact that two-thirds of nursing home residents have some cognitive impairment from diseases like Alzheimer's and other dementias may help explain their contribution to the problem. Only 12% of nursing home residents are married with a spouse who presumably would be concerned about the resident's care.
Christine L. McDaniel, J.D., reports: "The Office of the Inspector General of the Department of Health & Human Services has identified seven different types of elder abuse of nursing home residents: physical abuse, misuse of restraints, verbal/emotional abuse, physical neglect, medical neglect, verbal/emotional neglect, and personal property abuse (material goods)." Something to look forward to in our old age?
Expect to see lawsuits against nursing homes explode, and cost of liability insurance policies for nursing homes skyrocket. Will this help? What will surely help is the increasing political clout wielded by older Americans. The issue of nursing home quality is now on the front burner. Thanks to public demand, the government recently initiated a six-state pilot project as part of the Health and Human Services' Nursing Home Quality Initiative. Quality data on nursing homes will be collected and published.
Sources: "Abuse In Residential Long-Term Care Facilities: What Is Known About Prevalence, Causes, And Prevention," Testimony Before the U.S. Senate Committee on Finance," Catherine Hawes, Ph.D., http://finance.senate.gov/hearings/testimony/061802chtest.pdf. Christine L. McDaniel J.D., Elder Abuse In The Institutional Setting, May 1997 http://www.keln.org/bibs/mcdaniel2.html. "HHS Releases Quality Data About Individual Nursing Homes: Pilot Project in Six States to Help Consumers Make Informed Health Decisions," HHS News, April 24, 2002, http://www.hhs.gov/news/press/2002pres/20020424.html. All data retrieved August 2002.
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