Drugged and Docile?

    This weekend, the New York Times uncovered new, seemingly damaging information about nursing homes, this time unrelated to their mishandling of the Covid-19 epidemic. “Phony Diagnoses Hide High Rates of Drugging at Nursing Homes,” is a detailed investigative essay by three reporters that reveals that nursing  homes regularly under-report the frequency with which they prescribe sedating, antipsychotic medications for residents with dementia. Such medications, while useful for controlling  paranoia and delusions (which may afflict people with dementia), have not been shown to be more generally helpful in controlling the behavioral symptoms of dementia. They are, however, associated with a two-fold increase in mortality and other adverse effects. As a result, nursing homes have been under pressure for years to limit their use of “chemical restraints,” medications that suppress agitation--including general sedatives and antipsychotics. 

            The campaign against the use of anti-psychotics in dementia began with the Nursing Home Reform Act of 1987 (OBRA-8)7, legislation asserting that residents have the right to be free from physical and chemical restraints that are “not required to treat specific medical symptoms.” Then, nearly a decade ago, CMS announced a new approach, the National Partnership to Improve Dementia Care and Reduce Unnecessary Antipsychotic Use in Nursing Homes. This strategy provided for training modules for nursing home staff on how to handle residents with dementia; the strategy also involved including as a “quality indicator” the proportion of long-stay nursing home residents receiving an antipsychotic medication. In 2015, this quality indicator was added to the list of measures that comprise the overall rating of nursing homes that CMS publishes on its website, Nursing Home Compare.

            The last 34 years have seen a marked decline in the use of antipsychotic medications in nursing home residents. The Nursing Home Reform Act of 1987 led to a 27 percent reduction in antipsychotic use. The introduction of psychoactive drug use as a quality indicator led to a further ten percent fall in prescribing. Today, CMS statistics assert that 15 percent of long-stay nursing home residents regularly receive antipsychotics for some problem other than Tourette’s syndrome, schizophrenia, or Huntington’s Chorea, for which antipsychotics are approved. The new report by the NY Times suggests that the correct figure is more like 21 percent, with the excess accounted for by bogus diagnoses of schizophrenia: the implication is that doctors want to control their demented patients by sedating them, but are discouraged from doing so by CMS regulations, so they get around the rules by falsely labeling their patients as schizophrenic.  

            The Times argues that “caring for dementia patients is time- and labor-intensive. Workers need to be trained to handle challenging behaviors like wandering and aggression. But many nursing homes are chronically understaffed and do not pay enough to retain employees, especially the nursing assistants who provide the bulk of residents’ daily care.” All true. The Times goes on to argue that nursing homes with poor staffing ratios (facilities that get a 1 or 2 star rating for the adequacy of staff: patient ratios) dole out more antipsychotic medications than those with better staffing ratios (facilities with 4 or 5 star ratings for staffing). 

While this graph strongly suggests an inverse relationship between staffing and antipsychotic use, what is equally striking is that all the facilities, regardless of staffing, administer antipsychotics to upwards of 15 percent of residents, without appropriate justification. What this suggests, contrary to the NYT implication, is that nursing homes find that no amount of training and no  number of staff members can consistently and reliably treat all the behavioral symptoms of dementia.

            The unfortunate reality is that we know very little about how to care for people with moderate to advanced dementia who exhibit problematic behaviors. The behaviors I am referring to are not merely inconvenient to staff, such as “wandering” off the nursing unit unattended. They include aggression, paranoia, and delusions. That means hitting or spitting; it means slugging or biting the well-intentioned caregiver who sought to bathe or feed a resident. These behaviors are disturbing to persons with dementia, their caregivers and, in a nursing home setting, other residents. 

            The Alzheimer’s Association, the American Psychiatric Association, and others have come up with guidelines for managing these symptoms. Their recommendations advise beginning with psychosocial interventions: first tryi to determine the cause of the behavior (perhaps the person slugged the aide who tried to give him a shower because the water was too cold) and then either address the root of the problem (for example, adjusting the temperature of the shower water) or engage in distraction (taking the individual to a “quiet room” with a box of trinkets and other treasures to examine). But then comes the caveat: “Unfortunately, large population-based trials rigorously supporting the evidence of benefit for non—pharmacological therapies are presently lacking.” The evidence for these approaches is largely anecdotal and commonsensical--as is true for anti-psychotic medication.

            What is the solution? The Times seems to suggest we should either penalize physician prescribers, fine nursing homes that over-prescribe, add further regulations, or all three. Another alternative is to substitute “Green Houses” for conventional nursing homes. The Green House is a model of nursing home care that seems to be successful in many domains where traditional nursing homes have failed abysmally, so there is some reason to believe it may be a good way to deal with dementia. The Green House project restricts homes to no more than 12 residents, employs a home-like focus, and cross-trains staff members to meet any and all resident needs rather than using a rigidly siloed model. Green House nursing homes may be the answer: they are associated with high rates of family satisfaction as well as a superior track record in controlling the Covid epidemic. I hope Green Houses have the solution, but I can find no published data on their ability to manage severe dementia. In fact, it’s far from clear Green Houses, which currently provide care to a total of 3000 people (out of a total nursing home population of 1.3 million), in 300 facilities (out of a total of 15,600 nursing homes nation-wide), actually care for people who have dementia and troublesome behavior. Their limited numbers, small size, and high cost (45 percent of residents pay out of pocket compared to 22 percent of residents in usual nursing homes) suggest they may be able to cherrypick their residents.

            I am not advocating blanket use of psychotropic medications in nursing home residents. Nor am I endorsing mislabeling patients with psychiatric diagnoses they do not have. Antipsychotics should only be used in people with dementia in well-defined and relatively rare circumstances. Perhaps informed consent by the patient's health care proxy should be a prerequisite. But blaming nursing homes or pointing the finger at nursing home doctors or devising new regulations are not the best ways to serve people afflicted with dementia. What we need is to find better ways to alleviate the suffering of people with dementia. We should recognize that the doctors who prescribe antipsychotics are not necessarily lazy or devious, though any who are should be disciplined; many of them are simply desperate, desperate to provide relief to their patients. Medicare is poised to spend billions of dollars on aducanumab, a drug recently approved by the FDA for treatment of Alzheimer’s disease despite the paucity of evidence that it works and the abundance of evidence of its association with severe side effects. Perhaps we should instead devote resources to what is likely to be the more tractable problem, the symptomatic relief of Alzheimer’s disease and other dementias.

 

 

 

 

 

  

The Truth About Hospice

Hospice is widely touted as the best form of care near the end of life. As a result, the proportion of people who are enrolled in hospice at the time of death has been steadily increasing. Nearly half of all Medicare patients are receiving hospice care at the time of death. But a new report suggests that the quality of care they receive may not be what it should be. Moreover, a chunk of the $16.7 billion that Medicare spends on hospice (that was in 2016; it's more today) goes towards care that is unnecessary or not provided at all. What exactly is the problem? How widespread is it and how can patients and families identify hospices that provide high quality care?

While substandard care and fraudulent billing are distributed throughout the country, these practices occur disproportionately in the 64 percent of hospices that are for-profit. The bad behavior predominantly involves two specific variants of hospice care: general inpatient hospice care and hospice services that are provided within institutions, whether skilled nursing facilities or assisted living facilities. General inpatient care is an intensive form of care offered when symptom control cannot be achieved elsewhere (ie at home], so the patient is transferred to a hospital or skilled nursing facility. For this type of care, Medicare pays a per diem rate of $720, compared to $187 for home hospice (actually this is the rate for days 1-60, after that, the rate drops to $147 per day). The kinds of abuses that have been reported are indeed disturbing: the report gives several examples.

However,  General Inpatient Care accounts for only 1.5 percent of all the days that patients were enrolled in hospice. 

Other cases of allegedly inappropriate billing take place in Skilled Nursing Facilities (SNF) or in Assisted Living Facilities (ALF). Some instances were unequivocally fraudulent, as when hospices paid facilities to enroll patients in hospice, sometimes without the knowledge of patients or their families.  But again, it’s important to keep this in perspective.  A minority of hospice patients are cared for in these environments: 25 percent of hospice beneficiaries during the period the study examined (2006-2016) lived in a SNF and only 13 percent in an ALF.

Several of the criticisms leveled by the report are of questionable significance. The study says that many hospices fail to develop the mandatory “comprehensive care plan,” a document that spells out what services the patient needs and how they will be provided. This failing was especially egregious in the inpatient setting, where in 85 percent of cases, no such plan was documented. But the absence of a written plan doesn’t mean there was no plan or that inadequate care was provided. It means just what it says—the hospice did not create the requisite piece of paper. Maybe, just maybe, they thought it was a waste of time, a meaningless bureaucratic requirement.

Hospice care is also criticized for failing to provide physician visits. Actually, hospice does provide one physician visit. A face to face visit with a physician at the time of admission to hospice has been mandatory since 2011, so hospice patients do see a physician at least once during their hospice stay, which in many cases is short: over half of all hospice patients are enrolled for less than 30 days, and over one-fourth are enrolled for a week or less. Many hospice patients and their families would like more involvement of the medical profession, particularly their primary care physician or the relevant specialist, but that’s different from suggesting that the quality of care was poor because there were no medical visits at all.

Skilled nursing facilities are accused of double dipping, of billing Medicare for services that they already routinely provide as part of their usual care. This has been a worry since Medicare agreed to cover hospice care in a SNF. Care by nurses and nurses’ aides are a normal component of nursing home care. But that doesn’t mean that the services offered by hospice are redundant; on the contrary, the reason that hospice can be beneficial in the SNF environment is precisely because the usual nurses may not be skilled in pain management and the amount of aide time may be totally inadequate for a dying patient.

Lastly, the report argues that the payment system incentivizes hospices to minimize services and to cherry pick patients, selecting low-need, long-stay patients, such as those with advanced dementia, rather than high-need, short-stay patients, such as those imminently dying of cancer. We’ve known about this phenomenon for some time. In fact, CMS responded by modifying its payment system to pay more for the first few days of care and for the last few days of care and less for the in-between days. The practice of complementing high-cost patients with low-cost patients is only a problem if the low-cost patients don’t deserve to be enrolled in hospice at all. If they do, and there’s every reason to think they do, then it’s simply a good business strategy. Hospitals do the same thing when they add services for which they are generally reimbursed well to compensate for the services for which they are poorly reimbursed. The alternative would be to abandon the per diem payment system and go to fee-for-service. But that’s the model that is gradually fading away from the rest of the medical system because it promotes the use of volume rather than quality.

What should we conclude about hospice care in America? How should prospective patients respond to this report and how should Medicare respond? 

Patients and their families would do well to consult Hospice Compare, the CMS website, for basic information about quality. This tool relies principally on patient and family satisfaction surveys rather than objective measures, but it’s very revealing. Rather than add more measures, which is what the authors of the report propose,  I think the tool should be publicized: I was familiar with Hospital Compare and Nursing Home Compare, but I confess I did not know about Hospice Compare until recently--and the site was launched in August, 2017. 

If families have a choice between a not-for-profit hospice and a for-profit hospice, they may find it prudent to select the not-for-profit option.  On average, not-for-profit facilities are associated with higher quality care. 

As to steps that Medicare should take, increased across the board regulation, which is what the report advocates, seems unduly burdensome. Far wiser would be to target enhanced supervision and regulation to those areas that need it most, namely skilled nursing facilities and assisted living facilities. Stiffer penalties for malfeasance would also be wise. As with banking fraud, it’s not enough to slap the owner or executive director on the wrist. Jail time is a much more powerful disincentive to bad behavior. And the bad behavior we’re talking about here is neglecting people who are dying and in pain.

Where's the "Assist" in "Assisted Living?"

Assisted living (AL) exists for one very simple reason: most older people don’t want to live in a nursing home. They want privacy and autonomy, which nursing homes seldom offer. Despite all the efforts to put the “home” back into nursing homes, and despite the culture change movement that sought to transform the structure and organization of nursing facilities, most people still don’t want to live in a nursing home. One consequence is that assisted living facilities today are filled with people who not that long ago would have lived in a nursing home: they are old, they have multiple chronic conditions, and just about half of them have some degree of dementia. But assisted living facilities were created with the idea that they would be strictly non-medical residences. That’s a problem.

The tension between the idealized image of the assisted living resident and the actual assisted living resident increasingly translates into a struggle over what services AL can legitimately provide and who will regulate them. The rules are set by the individual states, so what happens in California is not the same as what happens in Alabama. In some states, only a licensed nurse can give a patient a medication. In other states, aides can give out medications. In some states, aides can supervise a patient taking a medication—they can remind the person he is supposed to take a pill and watch him doing it, but they can’t take the pill out of a bottle and give it to him. In other states, aides aren’t even allowed to do that. Periodically, state legislatures try to change the rules about just how medical AL should be. That’s what’s happening in Massachusetts today. Proposed legislation would allow AL to provide certain medical services that are currently unavailable: treating skin problems, providing wound care, giving injections, and administering oxygen. And predictably, conflict has erupted over whether the rules should be changed and if they are, who should be responsible for ongoing monitoring.

The controversy over whether and to how great an extent AL should be able to provide nursing care is usually framed as a concern about the medicalization of assisted living. The whole idea of AL is that it is much more like a person’s home than like a hospital and the concern is that if residents can have medical procedures on site, this will undermine AL’s home-like essence. But is that really the way to think about this issue?

After all, if an older person lives in his own residence, say the house where he has lived for the past fifty years, and his spouse gives him his medication, no one would object that his home has turned into a medical facility. Ditto if a family member applies skin cream to a rash. And does it turn the home into a hospital if a personal care attendant wheels in an oxygen tank and hooks it up to a mask or to nasal prongs worn by the older individual? Family members learn to give insulin injections. They are taught how to give artificial nutrition through a gastrostomy tube and to administer intravenous medication. They even operate all kinds of pumps and monitoring equipment. In fact, the report, Home Alone, issued a few years ago, found that almost half of all family caregivers reported that medical tasks formed part of their responsibility, including some pretty complex interventions.

Now nursing aides aren’t the same as family members. They take on whatever responsibilities they are assigned because it’s their job, not out of love or compassion or filial obligation. But the point is that if family members routinely perform these sorts of duties, in most cases with minimal instruction and no supervision, then surely aides hired by assisted living facilities could be expected to do precisely the same things, perhaps with a smidgeon more instruction and some degree of ongoing supervision. In any case, the act of putting on a bandage or attaching a bottle of Ensure to a feeding tube doesn’t automatically turn AL into a medical facility. But failing to letting aides do some of the tasks that people would expect their families to provide if they lived in their own home turns AL into a very inadequate sort of a home indeed.

Sometimes I think we draw the wrong conclusions about who can do what because we assume that the person who performs a given task should have a thorough understanding of the technology he or she is using. That would be nice, I suppose, but how many of us who drive a car have the slightest understanding of how the transmission works or the difference between a generator and an alternator? In the case of people taking medicines or getting treatment for a rash, we shouldn’t confuse administering treatment with monitoring effectiveness. I don’t see why the same person necessarily has to do both.

Years ago, I read a study of the use of psychotropic medications in the nursing home. The authors were shocked to discover that the nurses who gave out powerful medications had no idea of their side effects and couldn’t identify one if their life depended on it. I thought at the time and I still think today that the researchers’ dismay was misplaced. Someone should have been monitoring those nursing home residents: what was shocking was that nobody was. But did it have to be the person who doled out pills? Her job was to make sure that Sally Smith got pills that had been prescribed for Sally Smith—and not pills that had been prescribed for Stuart Smith. Her job was to make sure that Sally Smith got her pills three times a day and not twice or four times and that she actually swallowed the pills. Her job was to report to a physician if Sally Smith became very sleepy or was more confused that usual or developed difficulty with her walking—but not to figure out whether the pills were causing those problems.

The same goes for assisted living today. Of course people should be able to get simple “medical” treatment on site, just as they would if they had stayed in their previous home. Of course staff should be able to administer any treatment that family members routinely provide without an RN or an MD degree. Yes, staff need to learn how to do these things. And yes, a system needs to be in place to assure that patients—in this case we are talking about patients—have adequate monitoring of their medical problems. But let’s separate administration of treatment from ongoing assessment of the medical response to treatment. And let’s not transform the character of AL by subjecting it to the same rules as a nursing home. The way forward is to provide on site medical treatment while designing new rules that relate separately to the training and supervision of aides who are part of the staff and the provision of ongoing medical care by physicians and nurse practitioners who are not. 

Assisted Living: Boon or Boondoggle?

Assisted Living burst onto the scene as the hottest new option for senior housing in the 1990s. It was supposed to help keep older people out of nursing homes by offering them the help they needed while allowing them to retain their dignity and their privacy. So between 1991 and 1999, the number of such facilities increased by 49%. Between 1998 and 2003, the number increased another 48%. Fortune Magazine reported that assisted living was one of three leading growth industries and that Wall Street investors were falling all over each other to get a piece of the action. Since then, the industry has been plagued by problems, with critics charging that what AL actually offers is fraud, false promises, and neglect. Proposed new regulations in Massachusetts are intended to protect older people living in Assisted Living. Will these new rules, which are likely to go into effect in January, 2015, improve the quality of care or will they spell the death knell of assisted living?

The best way to understand what’s happening with Assisted Living is to look at the evolution of nursing homes, and the best way to understand nursing homes is to start with the “rest home,” the common ancestor of both nursing homes and Assisted Living. Rest homes or old age homes began appearing in the late 19^th century as a way to help care for the “deserving poor.” Until that time, long before the era of social security, older people who needed a little help to get by had to depend on their families. If they didn’t have a family, they ended up in the almshouse, large, unsanitary and unsavory institutions that warehoused society’s outcasts—those with alcoholism, syphilis, disabilities, or dementia. A number of  private sectarian groups decided in the 1890s and early 1900s to provide a residence for members of their community who were poor and alone through no fault of their own. In the Boston area, the Burnap Free Home for Aged Women was established in 1901 for elderly Protestant women; the German Ladies Aid Society was built in 1893 for indigent German women, and the Baptist Home started out in 1892 as a home for ailing Baptists. These institutions, like contemporary assisted living facilities, were not medically oriented. They demanded that residents be able to care for themselves and perform some basic housekeeping. Assuming they continued to be reasonably independent, they could stay on indefinitely and many did: the average length of stay at one facility was 13 years (for more background, see my book, The Denial of Aging.)

These early rest homes thrived for years, allowing a sliver of the elderly population to live in a homey environment with others of the same faith or ethnic background. But precisely because they were not medical institutions, and did not conform to the sanitary, dietary, or safety standards of hospitals, they began getting in trouble by the 1950s. State licensing requirements were developed that led to changes in sanitation, ventilation, and staffing—and that threatened to put the rest homes out of business as their costs soared. The next blow came with the Hill-Burton Act of 1954, which gave federal funds for building nursing homes, creating a new institution that competed for residents, the nursing home. The final blow came with the passage of Medicaid in 1965, which provided payment for care of poor people in licensed nursing facilities. A few rest homes survived (renamed “board and care facilities”), but not many.

For the next quarter of a century, nursing homes found themselves the target of more and more regulations. The new rules were intended to improve the quality of care in nursing homes, and they did. Squalor, abuse, and neglect gradually faded from nursing homes, thanks to the new rules. But the way they achieved their results was to remake the nursing home in the image of the hospital, as a medical facility, not a “home.” It was this reality that provided the impetus for Assisted Living. AL would focus on providing a “home,” not on nursing or medical care.

It was an attractive model. Live in your own apartment with a kitchenette and a front door that locked, have meals in a communal dining room, get some basic weekly housekeeping services, and have an aide to help with bathing and dressing for half an hour twice a day. More and more people moved into assisted living, although they were by and large upper middle class or affluent, as the rates were high and public support was rare. Over time, the proportion of people in AL with dementia rose to 40%. Many residents used walkers. Lots of them suffered from multiple chronic conditions. In fact, the people who live in AL today look a lot like the people who used to live in nursing homes—and those who live in nursing homes today are very, very sick or disabled. 

But AL was not set up to provide nursing care. Its staff did not administer medications (though facilities typically offered  “supervision” of resident "self-management" of medications). It did not monitor blood sugars in diabetics or weights in people with heart failure. It did not make sure that people with dementia remembered to go for their meals every day. The result was that some of the residents got into trouble. AL was blamed for insufficient monitoring and for accepting people who were too sick for what they offered. The solution? New regulations.

The proposed new Massachusetts rules are hardly the only regulations on the books. Most states have rules governing assisted living facilities. Massachusetts has plenty of rules affecting AL, rules that it last revised in 2006. Previous regulations were consistent with a pattern of increasing regulation, much as occurred in nursing homes and that made them the rigid, medicalized facilities they so often are. But these new rules take a different tack. Instead of medicalizing Assisted Living, they proclaim that AL must be an option only for those who are not sick. Like in the earliest AL facilities, and like in the 19^th century rest homes that were their ancestors, the new rules say AL must exclude anyone who needs more than the facility itself can provide. The way they would achieve this end is to require that anyone who received 90 consecutive days of skilled nursing services (a Visiting Nurse, a physical therapist, or hospice) must move out. 

What this means is that older people will not be able to age in place. If they need more assistance than the facility offers, they cannot bring in outside help. It means they cannot die in Assisted Living with the support of a hospice program—or only if they do so within 3 months of enrolling in hospice. Is this a good idea? Is there a bright line between nursing homes and assisted living facilities? Should a nursing home be more like an assisted living facility? Should assisted living have some of the features of nursing home? Or is the concept of assisted living fatally flawed?

Part II of this article will be published next week.