In this chapter, we will consider the topics of long-term care and end-of-life care.  Specifically, we will generally consider what long-term care (LTC)–also referred to as long-term services and support (LTSS)–entails, who receives it, who provides it, where it is provided, and how it is who paid for.  In doing so, we will also consider policy and workforce challenges related to LTC/LTSS as the proportion of older adults and others who need LTC/LTSS in the U.S. population grows.  In this chapter we will then consider the topic of end-of-life care by watching the Frontline documentary film “Being Mortal.”

Excerpts from “Long-Term Services and Supports | FAQs”

National Conference of State Legislature – June 13, 2017

What are long-term services and supports and where are they provided?

Millions of Americans of all ages need long-term services and supports that result from disabling conditions and chronic illnesses. LTSS include the wide array of medical and non-medical services that are provided over a prolonged period to people of all ages with impaired mobility, impaired cognitive function, physical or mental disabilities, complex medical needs or chronic disease. Caregivers provide services and supports to help individuals with activities of daily living—such as eating, bathing, and dressing—or other activities such as housekeeping or managing medications that help people live independently, while licensed health professionals provide more complex medical care.

Individuals may need these services on a regular or occasional basis, for a few months or a lifetime. Examples of long-term services include nursing facility care, adult daycare, transportation, home health aide or family caregiving assistance and personal care services. Paid or unpaid caregivers can provide these services in many different settings, including in their homes, in community-based settings and in institutional settings, such as nursing homes and assisted-living facilities (see Figure 2).

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The number of older Americans is expected to more than double by 2050, and many elderly people are living into their 80s and 90s. With advancing age comes the likelihood of increased disability, frailty and illness. In addition, medical and scientific advances mean that people born with developmental or other disabilities or who suffer injuries, such as traumatic brain injury, have greatly improved survival rates, but they may need assistance throughout their lives.

Source: “Medicaid and Long-Term Services and Supports: A Primer” The Henry J. Kaiser Family Foundation, May 26, 2017, http://kff.org/medicaid/report/medicaid-and-long-term-services-and-supports-a-primer/

Who needs and receives long-term services and supports?

Approximately 12 million Americans of all ages rely on personal assistance and other long-term services and supports in their home, community or in an institutional setting. According to a 2013 U.S. Senate Commission on Long-Term Care report, that number is expected to increase to 27 million by  2050. Many people with developmental or severe physical disabilities, mental illness and cognitive impairment, as well as the frail elderly, need long-term services and supports.

Source: “Infographic: Medicaid Spending & Enrollment” The Henry J. Kaiser Family Foundation, May 26, 2017, http://kff.org/interactive/infographic-medicaid-spending-enrollment/

Individuals who require LTSS represent a diverse group, including children who are medically fragile, working adults and individuals over age 65 with different types of physical, cognitive and mental disabilities. LTSS use varies among populations. Medicaid is the largest single payer of long-term care services.  Medicaid-eligible people who use long-term care services are among the most disabled and chronically ill of the total Medicaid population. Although they accounted for only 6 percent of the Medicaid population, Medicaid LTSS accounted for 35 percent of Medicaid spending in 2013, according to a 2015 Congressional Research Service report. Per-enrollee expenditures for individuals who are over 65 or disabled are up to four times the annual cost for children and adults, as shown in Figure 4.

Moreover, the number of people who need LTC services is expected to increase rapidly during the next several decades. People age 85 and older constitute the fastest growing population in the United States. Their numbers are expected to more than triple from about 6 million in 2015 to almost 20 million by 2060, foreshadowing an ever-expanding need for long-term services and supports. Millions of Americans receive publicly funded LTC services today or are paying for those services themselves while being cared for by family members. However, many other Americans go without needed services because they live alone without family support, lack the financial resources to pay for care, and/or lack information about the community resources that they might use.

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Who provides long-term care?

The LTSS workforce is comprised of paid and unpaid caregivers. In 2014, 3.27 million direct care workers provided LTSS, comprising almost 21 percent of the nation’s overall health workforce according to a 2016 [Government Accountility Office] report. Workers in the LTC system tend to be paraprofessionals, who carry titles such as personal care assistant, home care aide, resident care aide or certified nursing assistant. Low wages and limited benefits contribute to high employee turnover in nursing homes, home care agencies and other settings. The result can be inadequate care and poor quality of life for consumers, and high costs and low productivity for providers.

Most long-term services and supports are provided by unpaid caregivers—including relatives or friends—in home- and community-based settings. Approximately 34 million Americans provided unpaid care to an adult age 50 or older in the prior 12 months, according to a 2015 AARP report, translating to $470 billion in long-term services.

Workforce shortages that already exist in the long-term care system are likely to worsen in coming decades as demand grows, particularly in home and community care.  Although the expansion of publicly funded consumer-directed care may ease the situation somewhat, finding answers to LTSS workforce issues remains a major concern for state policymakers. States also are improving consumer access to long-term care services by creating Aging and Disability Resource Centers that coordinate information and assistance. The centers are intended to serve as the entry point to a state’s LTC services and to help people make informed decisions about LTC options. In some states, the centers counsel and refer inquiring residents, regardless of income, to available community services and determine eligibility for publicly funded LTC services.

How much does LTSS cost and who pays for it?

LTSS spending includes payments for services provided in nursing facilities and residential care facilities, as well as in an individual’s own home. In addition, a significant amount of care is provided by informal, unpaid caregivers who fill the care gaps without compensation. Total national spending on LTSS from all sources totaled $310 billion in 2013, with Medicaid paying for 51 percent of total costs, followed by other public health insurance programs (21 percent), out-of-pocket (19 percent), and private insurance (8 percent) (see Figure 1 above).

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Various studies suggest that home and community-based services are cost-effective. According to the Kaiser Family Foundation, in 2015, the median annual cost for nursing facility care was $91,250. Generally, home- and community-based services are less expensive than institution-based care, but may still represent a major financial burden for individuals, their families and states. In 2015, the median cost for one year of home health aide services (at $20/hour, 44 hours/week) was almost $45,800 and adult day care (at $69/day, 5 days/week) totaled almost $18,000.  Data reflect that it is cost effective to provide support to people who want long-term services and supports in their homes and communities.

The high costs associated with long-term services and supports exceed what most individuals can afford. The costs of long-term services and supports vary based on where one lives, the level and type of care needed and other factors. According to a 2016 report by Genworth Financial, the median costs for long-term care varied depending on the type of care needed, from $17,680 for adult day health care to $82,000 for nursing home care. The costs for the same level of care vary considerably between states. For example, the costs for a semi-private nursing home room range from $52,925 in Oklahoma to $131,853 in New York. The national and state-by-state median annual long-term care costs for each category of care are summarized here.

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“Being Mortal” Frontline Documentary Film

Next, please watch the following Frontline documentary film “Being Mortal.”  As you do so, please pay particular attention to the items in the study guide.

If video doesn’t appear, follow this direct link: Being Mortal  (54:11 min.)

To expand the video, click the Full Screen icon. To view subtitles, click the CC icon.  You can also access the transcript here.

Breslow, J. M. (2015, February 10). Season 33: Episode 6 – Being Mortal. Frontline.