Assisted Living Centers: A Largely Unregulated, Booming Industry

Living Trusts are an important service for California Document Preparers, and many of our clients are retired or thinking about it. As a result, discussions frequently surface about a range of life-planning topics such as social security, financial planning and hospice. A recent New York Times article about assisted-living facilities got our attention.

Federal investigators have discovered significant gaps in the way that assisted-living facilities are being regulated, potentially jeopardizing the care of the growing number of people who rely on these services from a booming, poorly regulated industry.

Assisted Living: Little accountability or regulation

According to the Government Accounting Office (GAO), the federal government lacks even basic information about the quality of assisted living services provided to low-income people on Medicaid. Billions of dollars in government spending are flowing to the industry, yet it has only vague standards and limited supervision. States reported spending more than $10 billion/year in federal and state funds for assisted living services for more than 330,000 Medicaid beneficiaries. That’s an average of more than $30,000 a person, with very little accountability.

Individual states are supposed to keep track of cases involving the abuse, neglect, exploitation or unexplained death of Medicaid beneficiaries in assisted living facilities.

• More than half of the states were unable to provide data about the details of those cases.
• Out of 50 states, only 22 were able to provide data on “critical incidents—those cases of potential or actual harm.” These states reported more than 22,900 incidents, including physical, emotional or sexual abuse of residents.
• Many of the people involved in these “incidents” are older, with physical or intellectual disabilities. More than a third of residents have Alzheimer’s or other forms of dementia.

The National Center for Assisted Living, a trade group for providers, said states already had “a robust oversight system” to ensure proper care for residents. According to this group, California, Oregon, Rhode Island and Virginia have adopted laws to enhance licensing requirements and penalties for poor performance of facilities.

The report, “Improved Federal Oversight of Beneficiary Health and Welfare Is Needed,” grew out of a two-year study requested by a bipartisan group of senators.

• The report concludes that the Centers for Medicare and Medicaid Services have provided “unclear guidance” and have done little to monitor the use of federal money that is being directed toward assisted living facilities.
• Without a clear process for evaluating and monitoring facilities, the committee has no way of knowing if states are meeting their commitments to protect the health and welfare of Medicaid beneficiaries in assisted-care facilities.

Standards for nursing homes

In 1987, Congress established standards for nursing home residents’ rights, imposed dozens of new requirements on homes, specifying the services they must provide. Yet assisted-living facilities have largely escaped scrutiny, even while the GAO says the demand is likely to increase with the aging baby-boomer population and increased life expectancy. Not surprising, the potential to make money off a needy population has attracted investors to an unregulated industry.

The report was commissioned by a bipartisan group of senators

Democrats and Republicans commissioned this report, and the Trump administration is recommending that federal officials should clarify the requirement for states to report on the abuse or neglect of people in assisted living facilities. The administration said it was studying whether additional reporting requirements might be needed.

Assisted living was not part of the original Medicaid program, but many states now cover it under waivers intended to encourage “home and community-based services” as an alternative to nursing homes and other institutions. The report said that assisted living could potentially save money for Medicaid because it generally costs less than nursing-home care.

Nothing in the report disputes the fact that there are many assisted living facilities that are doing an excellent job of providing high-quality, compassionate care for their residents.

The mission of assisted living facilities

Assisted-living communities can be a wonderful bridge between living at home and living in a nursing home. Residents live in apartments or houses; they have a high degree of independence but require help managing their medications and performing daily activities like bathing, dressing and eating.

Personal experience with assisted living

My own folks moved to a retirement community when their home became too much for them to manage. As their friends died, they also were becoming increasingly isolated. They  loved this busy new environment, the activities and the warm, friendly people. They lived happily in their own little unit for seven years.

When my stepfather had a stroke, my mother was too weak to care for him. As part of their contract with the community, they were able to move to assisted care when and if it became necessary. The stroke was the catalyst, and we moved both of my parents into assisted care. Before long, my stepfather moved into nursing care. Both of my parents died within six months. During this time, they were extremely well cared for by kind, generous caretakers to whom we were all very grateful.

We encourage everyone to create a Living Trust

But for those whose parents have been diagnosed with some form of dementia, the timing becomes much more critical. Our dedicated team is helpful, compassionate and affordable. Contact California Document Preparers at one of our three Bay Area offices today to schedule an appointment.

Hospice: A Family’s Tragic Tale of Inadequate Staffing Levels

Living Trusts are an important service for us, and because many of our Trust clients are either retired or thinking about retiring, conversations about healthcare, assisted living and long-term care frequently surface. Hospice is another topic that gets a lot of attention. It’s an industry that has exploded over the last few years as healthcare providers strives to provide services for an aging baby-boomer population.

A recent article in The New York Times, This Was Not the Good Death We Were Promised, is a very moving story about one woman’s hospice experience with her father, who was diagnosed with pancreatic cancer, which is notoriously difficult to treat. They had decided that he would die at home, surrounded by his family and those things which were familiar and dear to him. The author spent the final weeks with her father, watching favorite TV episodes, poring over old photos and reminiscing.

A family enlisted the support of hospice to help their father die

There was little she could offer her father at this point in his life, but what she could promise him was a painless, easy death. They were wary of the unnecessary medicalization of hospital deaths, so they had enlisted the support of an in-home hospice agency to ease him through his final days.

When a doctor determined that her 83-year old father had about six months to live, the author invited a hospice representative to their home. The representative provided a summary of the Medicare-provided services. Most importantly, she told them that if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.

Looking back, the problem centered around inadequate staffing levels

Things went well for a few months. A caretaker made regular visits and a physician’s assistant prescribed pain medication for the relatively little pain he was having. But towards the end, her father experienced a deterioration—and hospice failed to respond as promised.

At 7:00pm on the last day of her father’s life, his pain spiked dramatically. His nurse turned her phone off at 5:00pm, so the author called the hospice switchboard. No doctor was available, and it took the receptionist an hour to reach a nurse by phone, who told them to double his dose of oxycodone. Yet that had no effect; her father needed another level of care.

The only on-call nurse was helping another family two hours away. The author and her sister experimented with Ativan and more oxycodone and fumbled through administering a dose of morphine their mother found in a cabinet. A nurse arrived at midnight, and, incredibly, had brought no painkillers.

After the nurse left, the father’s pain broke through the morphine

The author called the switchboard again, and it took three hours for a new nurse to arrive. She was surprised the patient hadn’t been set up with a pump for a more effective painkiller. This nurse agreed that they were now in a crisis that should trigger the promised round-the-clock care. She made a phone call and told the family that the crisis nurse would arrive by 8 a.m. But the crisis nurse did not arrive by 8:00, 9:00 or 10:00am. Apparently the nurse had strep throat, but another nurse would arrive by noon. By 2:00pm, no nurse had arrived. By this time, the father had slipped into a coma, leaving his family heartbroken that he had been in severe pain and would not be able to hear their final goodbyes. The crisis nurse finally arrived at 4 p.m., but there was little left to do.

At the end of life, things can fall apart quickly

Neither a medical specialist nor a hospice worker can guarantee a painless exit. But this family was assured that a palliative expert would be at their father’s bedside if he needed it. No one mentioned the strain on their staffing levels that would make this impossible.

The author saw in a report several months later that the home hospice system is stretched thin and falling short of its original mission. Many of the more than 4,000 Medicare-certified hospice agencies in the U.S. exist within larger healthcare or corporate systems, which are often under pressure to keep profit margins up. Hospice began as a nonprofit, with pure motives. With the large, aging baby-boomer population and the profit potential, many more for-profit hospice organizations have sprung up.

Hospice complaints are in the minority

Kaiser Health News discovered that there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80% of people reported “getting timely care” from hospice providers, and only 75% reported “getting help for symptoms.” That said, more than a million Medicare patients go into hospice care every year, and those with complaints are in the minority. A new government-sponsored website called Hospice Compare will soon include agency ratings, which may inspire some to raise their level of service. When the author looked up the agency they had used, its customer-satisfaction rate for handling pain — based on the company’s self-assessment — was 56%.

Just as this family had an unfortunate hospice experience, many other people can tell stories of the wonderful care their family members received from hospice providers. Thoroughly researching the background of a hospice agency before engaging it may help ensure that your loved ones receive excellent care.