This piece is part of Fighting for Our Lives: The Movement for Medicare for All, a Truthout original series.
Every day about 10,000 people turn 65 in the United States, and the number of people over the age of 85 will more than triple by 2050. As a result, the demand for long-term health care services and end-of-life care will surge in the coming decades, increasing pressure on a system that is already suffering from high costs and workforce shortages. Unless policymakers make serious changes to how we fund and operate the health care system, the process of confronting chronic illness and death in the United States could become increasingly expensive and difficult for everyone but the very wealthy.
This isn't just bad news for the aging baby boomer generation, which is expected to increase the number of people over the age of 65 in the US from 48 million to 88 million by 2050. In the decades to come, many millennials may find themselves navigating the current health care system's complicated mix of government benefits, out-of-pocket costs and private insurance offerings with their elderly parents.
Meanwhile, the Republican plan to repeal the Affordable Care Act (ACA) that passed the House last month would gut ACA provisions that kept insurance companies from gouging older customers and cut $839 billion from Medicaid over the next decade. The bill would increase private insurance rates for older people with lower incomes and leave 5.1 million people between the ages of 50 and 65 without insurance by 2026, according to the Kaiser Family Foundation. Despite the popular misconception that Medicare covers all of seniors' health care needs, millions of Americans over 65 are also enrolled in Medicaid. Elderly people would certainly suffer if the program saw deep cuts.
The proposed cuts to Medicaid are generally unpopular, and the Republican House bill has slumped in the polls. The repeal effort has recently stalled in the Senate due to deep divisions among Republicans. However, reports now indicate that Senate Majority Leader Mitch McConnell has been hammering out a compromise on Medicaid behind closed doors, with the goal of holding a vote on a Senate repeal package before a July 4 recess. A repeal is not a given, but it will take a sustained push from those who value affordable health care for low-income and working families to prevent a repeal while the GOP has a majority in Congress.
Amid this crucial resistance, a renewed push has also emerged for the creation of something different: a single-payer system. A House bill for a "Medicare for All" health plan has more co-sponsors than ever among progressive Democrats, and grassroots activists are rolling out campaigns across the country. When it comes to the issue of how to best serve elderly patients, advocates say guaranteeing health coverage for everyone would help prepare the system for an aging nation.
Medicaid and Elderly Americans
"The profit-seeking in end-of-life care is the real problem, and we could get rid of it," said Dr. Andy Coates, an assistant professor of internal medicine and psychiatry at Albany Medical College in New York and a member of Physicians for a National Health Program (PNHP), the group of doctors and reformers backing single-payer legislation in Congress.
Coates told Truthout that many patients facing terminal conditions receive "palliative care," which focuses on treating symptoms of serious illnesses, and then "hospice care" at the very end of life. Palliative specialists consider difficult questions posed by life-threatening illness: What treatments may be necessary or desirable, and what treatments would a patient want to avoid even if they could prolong life? How is the patient managing pain? What does the patient still need to get done in life before they die? Palliative specialists focus on both symptom management and psychological wellbeing.
New strategies for delivering care and reforms to Medicare under the ACA show promise for lowering costs and improving palliative and hospice care by empowering patients to take greater control of their medical decisions. Yet patients with chronic and life-threatening conditions are still bounced between providers and experience high rates of expensive and preventable hospitalizations.
While older people often juggle a number of medical expenses they must pay themselves, most also depend on the government's main health programs for at least some of their care. Medicare provides insurance to people age 65 and older, and 8 out of 10 people who died in 2014 were in the program. Beneficiaries in their last year of life accounted for 25 percent of Medicare spending that same year.
While Medicare is the largest insurer of health care provided in the last year of life, Medicaid is the nation's largest provider of long-term care services for elderly, chronically ill and disabled people. Medicare coverage tends to focus on short-term care that is medically necessary, such as providing devices after an accident or a nursing home stay for less than 100 days. Many older people in need of long-term care at home rely on Medicaid, often after spending off their personal assets on out-of-pocket costs in order to qualify. In 2011, 10 million people were enrolled in both programs, according to the Kaiser Family Foundation.
In a single-payer system, the government guarantees health care to everyone through a universal insurance program. In many countries with single-payer systems, private insurance is still available but tightly regulated, and many providers remain private. Together, Medicaid and Medicare already pay for the majority of long-term and palliative care services in the US, so some might say that the US has almost achieved "universal" coverage when it comes to end-of-life care -- but without added benefits that could support low-wage workers and keep elderly folks from falling into poverty.
"We're paying for a single-payer system, and we're not getting it by any stretch of the imagination," Coates said.
PNHP supports a single-payer proposal known as "Medicare for All," but that doesn't mean a transition to a single-payer system wouldn't change things for seniors covered by Medicare. The single-payer legislation currently in the House, entitled the "Expanded & Improved Medicare for All Act," would create a single, streamlined public agency that would pay health claims, rather than a profit-driven bureaucracy of competing insurance firms. "Expanded and improved" Medicare would mean that everyone, regardless of age, would be covered for all medically necessary services, including dental, vision and types of long-term care that Medicare does not currently cover.
Such a system would simplify how the nation pays for health care, and PHNP expects single payer to save hundreds of billions of dollars in administrative costs created by the insurance bureaucracy. These savings would be used to eliminate out-of-pocket costs such as copays and deductibles and provide patients with more freedom in choosing a doctor, according to PNHP.
The US has almost achieved "universal" coverage when it comes to end-of-life care -- but without added benefits that could support keep elderly folks from falling into poverty.
"The country has the potential to have a great health system -- truly great," Coates said. "Instead, we have a mediocre health system and a bureaucratic mess, and everyone knows that."
Low Wages and a Growing Shortage of Caregivers
As the nation ages, more people are trying to stay out of nursing homes as long as possible, and the government now promotes home care and assisted-living models as less costly alternatives. As the ACA expanded Medicaid, the Obama administration offered states waivers to spend Medicaid dollars on "home and community-based" services for those in need of long-term and palliative care. These programs allow families to hire home-care workers and nursing assistants or support themselves while caring for loved ones. This support is crucial for members of working families who often struggle to care for elderly and disabled relatives while maintaining low-wage jobs.
"Right now, end-of-life, physical care for patients who can't get out of bed is done by the immediate women family members, who are often unpaid and financially devastated," Coates said of working families. "If you are up all night caring for your dad and you are too tired to go to work, then you are going to lose your job."
Physicians and policymakers alike say that using Medicaid waivers to shift care from expensive nursing facilities to home and community settings leads to better health outcomes, saves public resources and helps struggling families. The need for these waivers is expected to grow as the population ages, but the House bill to repeal the ACA would put these programs on the chopping block as states grapple with federal funding cuts.
Medicaid supports aging populations in another way: Many low-wage workers who provide long-term and palliative health services depend on the program for their own health care, according to Josephine Kalipeni, director of policy at Caring Across Generations, a national campaign advocating for aging patients and their caregivers.
"When we think about aging baby boomers and people with disabilities who are able to be at home, a lot of that is being supported by the fact that a lot working people and home-care workers rely on Medicaid to get their health care," Kalipeni said.
In fact, experts say a growing labor shortage is a top concern. Nursing assistants, personal care aides and home-care workers who care for the elderly and disabled are leaving the industry in droves due to poor working conditions and extremely low wages. Meanwhile, demand for this labor is growing and will continue to grow as baby boomers age, medical advances allow people to live longer, and policy shifts put a greater emphasis on providing end-of-life care in domestic and community settings rather than in expensive nursing facilities.
"We're paying for a single-payer system, and we're not getting it by any stretch of the imagination."
"We are seeing shortages all around the country," said Robert Espinoza, vice president of policy at the Paraprofessional Healthcare Institute (PHI), a group that tracks workers who spend the most time caring for elderly people and those with chronic illnesses and disabilities.
Espinoza said a lack of government data on this workforce makes it difficult to quantify just how bad this shortage is going to get and which parts of the country will be hit the hardest. What we do know is that these workers are most often women, and the number of working-age women willing to do the job is not keeping pace with the aging population. About 40 to 60 percent will leave their jobs within 90 days, most often citing low wages, a lack of career opportunities and difficult supervisors. Espinoza said workers often leave for higher paying but less arduous jobs in food service or retail, particularly in rural areas where the number of health care providers is already slim.
Home-care workers assist patients with intimate daily tasks, such as eating and bathing. Many also provide both physical and emotional comfort to the sick and dying, a form of emotional labor that's hard to put a price on. It's one of the fastest growing occupations in the country, but wages have stagnated in the past decade, with workers making a median wage of $10.11 an hour adjusted to inflation, according to PHI. The work is often part-time, with workers earning an average of $13,000 and receiving few benefits from employers. As a result, 1 in 4 home-care workers live below the poverty line and rely on public assistance like Medicaid.
Wages aren't much better for the nursing assistants, who often work part time and earn a median income of $19,000 a year.
Government insurance programs keep these workers and their patients afloat. Medicare and Medicaid are the major public programs that provide about 72 percent of the home-care industry's earnings and 73 percent of the nursing home industry's $116 billion in annual revenue, PHI reports. In addition, Kalipeni said Medicaid relieves pressure from the Medicare system by helping low-income people stay healthier in the years before they qualify. So, what would happen if the GOP were to succeed in making drastic cuts to Medicaid?
Under the House bill, caps on Medicaid spending would be placed on states by 2020, forcing states to start making their own cuts to balance the books. States will focus remaining funding on the Medicaid services they are required by law to cover; home and community-based services and the waivers behind them are optional. States already limit funding for these services due to budget constraints, and they are likely to be dropped soon after federal Medicaid cuts hit state level, according to the Center on Budget and Policy Priorities.
"[The House bill] provides more flexibility of what states can do, but way less resources to be innovative and productive … and that just doesn't make sense," Kalipeni said.
Kalipeni has spent much of her career working on the ACA. She does not believe it's a perfect law, but says it's much better than the Republican proposal. Unlike the House bill, the ACA contains provisions to hire and train the workers needed to meet increasing demand for health care, particularly in poor and rural areas. She said the ACA did not go far enough with this and other reforms, but that it highlighted the importance of thinking ahead about the health care workforce.
"We want to ensure that the need to recruit and retain a well-paid workforce [is] an intentional component of any of the working family policies moving forward," Kalipeni said. "This can't be kicked down the line or moving on a parallel path. This has to be built in. Additionally, as this country continues to rely heavily on family caregivers, supports for family caregiving have to be seen as a critical part of any changes to our health care system."
Seniors and the Single-Payer Future
The ACA is far from perfect, the House bill to repeal it is unpopular and Senate Republicans are starting to doubt whether they can agree on their own overhaul package anytime soon. Out of this policy void has come the renewed interest in a single-payer system. In addition to the House bill to establish Medicare for All, with its record 112 co-sponsors, single-payer legislation is on the move in New York and California. Sen. Bernie Sanders of Vermont, who ran for president on a single-payer platform, is under pressure to introduce single-payer legislation in the Senate.
Kalipeni said a move toward a single-payer or another type of universal system that could streamline services and increase spending on wages would be a powerful step forward for both elderly patients and their caregivers.
"We are one of the few developing countries that is behind in providing universal care in a way that increases access, shares costs and meets people's needs," Kalipeni said. "Streamlining health care in this way could help manage costs and improve people's user experience with health care systems."
Voters are catching on. In April, a Morning Consult/Politico poll taken found that more likely voters supported single payer than opposed the idea, including 37 percent of Trump voters. In January, before the Republican repeal proposals filled Capitol Hill with talk of cuts and millions losing health coverage, a Pew Research poll found that 60 percent of voters agreed that the government should be "responsible for ensuring health care coverage for all Americans."
Advocates say much of the support for single payer comes down to the bottom line: We pay more for health care in the US than other industrialized countries, but have poorer health outcomes and shorter lifespans.
There are so many "middle men" and incentives to cut corners at the expense of patients that it turns the act of dying into a "profit-making moment."
Coates is particularly concerned about private hospice providers who are incentivized to spend less than they receive from Medicaid and Medicare in order to turn a profit, particularly since the ACA extended Medicare's hospice benefits. Currently, he said, there are so many "middle men" and incentives to cut corners at the expense of patients that it turns the act of dying into a "profit-making moment." As private businesses, these providers don't have to share their finances with the public. Under a single-payer system, there would be a political incentive to require private hospice providers to open their books in order to receive public funds.
Coates said some people believe a single-payer system would allow the government to make their health care decisions for them, but that's simply not true. In reality, the government's single-payer office would be in charge of protecting a patient's right to privacy and autonomy while holding health care providers accountable for the services it's paying for.
"We should have a system that provides dignity, and if you never have control of the money, then how are you ever going to transform it?" Coates said.
The Republican majority in Congress is sure to keep single-payer proposals stuck in committee, but advocates say now is the time to push establishment Democrats to embrace single payer as a bold alternative to the ACA and Republican austerity.
Coates said that most people already support the ideas behind single payer, and politicians in both parties are out of step. According to polls, most people agree that when someone suffers from a serious medical condition, the resources for treatment should be available to them, not locked behind sky-high premiums and out-of-pocket costs.
"Even well-to-do Trump supporters would still say that, if a kid has leukemia, then he should receive the best care this country has to offer," Coates said.
The same goes for the elderly. As the shortcomings of the Medicare system illustrate, simply installing a single-payer system for a large group of people is not enough unless that system covers everything under the health care umbrella. A meaningful single-payer plan would include everything that Medicare already covers while meeting the rest of the needs that come with aging, including those currently supported by Medicaid, out-of-pocket costs and family members.
To achieve a high quality of care under such a system, care workers must be fairly compensated. This is where the movement for health care as a human right intersects with so many others. A majority of home care workers are women of color, and many come from immigrant families. Kalipeni said that both the Fight for $15 campaign to raise the minimum wage, as well as the movements for racial justice and immigrant rights, are central to the health care fight, because they're focused on improving conditions for the workers who will be caring for baby boomers at the end of their lives. If these workers can receive proper wages, benefits and training, then they can keep aging patients healthy and out of hospice, saving more health care dollars in the future -- and saving lives.
When we look at health care reform through the lens of dying and death, suddenly our movements -- and our very lives -- become inextricably intertwined.
Correction: The original version of this article incorrectly stated that Sen. Bernie Sanders has introduced single-payer legislation in the Senate. Sanders recently made statements indicating that he would introduce a single-payer bill, but he has yet to do so.