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. 

The Role of the Rules

In a ringing endorsement of autonomy, the preamble to the regulations governing Assisted Living  (AL) in the Commonwealth of Massachusetts refers to AL facilities as “an important part of the spectrum of living alternatives for the elderly” that “should be operated and regulated as residential environments with supportive services and not as medical or nursing facilities.”  Recognizing that the people moving into assisted living facilities do so because they have some sort of “physical or cognitive impairment,” the document goes on to say that the facility “should support the goal of aging in place through services, available either directly or through contract or agreement.” These services, it is hoped, will “compensate” for the individual’s deficits, “while maximizing his or her dignity and independence.” Great language. But how does this square with the proposed modification of the regulations that would evict residents if they require 90 consecutive days of “skilled nursing services,” that is a visiting nurse or a physical therapist or hospice care. Aren’t these services exactly what is entailed by contracting for the assistance necessary to stay in the facility, despite mental or physical difficulties?

It doesn’t (my first question) and they are (my second). The new regulations would go a long way towards undermining what makes assisted living attractive. Presumably the state’s actions are intended to protect its citizens. And the state has the right to promote the health and wellbeing of the populace: since the early 1800s, the Supreme Court has upheld the right of the states to pass laws (and to promulgate regulations allowing for implementation of those laws) that further the  “health, peace, morals, education and good order of the people.” But just who is it that the regulations would protect? Is it the owners and operators of the assisted living facilities, by enabling them to evict any residents whom they deem too sick to stay, and thereby assuring that anyone who might sue for neglect would not be living in the facility in the first place? Or is it the most independent residents of assisted living, some of whom do not like having impaired elders in their midst, people who remind them of their own potential frailty? Surely it is not the residents who require considerable help and who are getting just what they need by contracting with agencies such as the visiting nurse association or a hospice.

In fact, the regulations will not protect the vulnerable—if they are enforceable, which they may not be as people can simply cancel their services for a few days every three months and may then be technically following the rules. The vulnerable are those who need more help than the assisted living facility provides directly and who haven’t made arrangements with a visiting nurse association or a hospice or some other regulated organization. Under the new rules, they will be discouraged from getting the help they need because it would jeopardize their right to stay in their home, the assisted living. If they seek any outside help at all, it will need to be from an unregulated organization, not one that provides care that is officially recognized as “skilled.”

So what is the solution? What should the state do to fulfill its expressed desire to promote the autonomy of older individuals with cognitive and/or physical impairments, allowing them to live in the “least restrictive” environment? Two steps would go far to achieving this goal.

First, rather than evicting their neediest residents, assisted living facilities should provide a comprehensive assessment of their tenants and help residents and their families come up with a viable plan for addressing the needs identified by that assessment. The assisted living doesn’t have to actually offer the needed services; it simply has to describe them. Residents who prefer not to avail themselves of the help they could sign a “negotiated risk contract” that acknowledges they are putting themselves in jeopardy.

Second, nursing homes need to be modified so that the emphasis is more on “home” and less on “nursing.” Only if older people have an acceptable alternative, one that offers the help they need without being a “total institution” that dictates their every move, will they no longer be desperate to stay in assisted living, even when they can only do so by supplementing their care with large amounts of outside help. The Pioneer approach to nursing home care, with its resident-centered philosophy, and the Green House model, with its small, non-institutional character, are attempts to radically transform nursing homes. But as I have argued in earlier blogs, many if not most facilities that aspire to “culture change” fail. They no longer leave residents lined up in a long hall in their wheelchairs—but instead, they leave them seated at the dining room table, staring into space, essentially belted in by the table. Explaining why the medicalization of nursing homes leads, almost inevitably, to just the kind of place that old people are trying to stay away from, will require more discussion at another time. Suffice it to say for the moment that the regulations governing nursing facilities are a large part of the reason that nursing homes today are still more like hospitals than they are like residences.

States can amend the regulations for assisted living facilities to better protect their neediest citizens. But that will mean helping residents get the assistance they need, not booting them out if they are using outside services. And it will mean fostering a true continuum of care in which nursing homes are simply assisted living facilities that supply the assistance themselves rather than expecting residents to contract independently for services.

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.