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.

Will Regulations Kill Assisted Living?

Or is it already dead? See post this weekend...

Compare and Contrast

I’ve long wondered how the US compares to other developed countries in providing medical care for older people. Our overall performance in the health care domain, when compared to the achievements of countries such as Australia, Canada, France, and Switzerland, has regularly demonstrated deficiencies —but many of these are related to the enormous number of uninsured individuals in the US. Seldom were people over 65, who in the US are almost all covered by Medicare, considered separately. At last, the Commonwealth Fund, which has carried out many of the previous surveys, looked into the situation for older adults. The results are illuminating.

First, the good news. The US is not at the bottom of the list on all of the indices, just some. Compared to the other 10 countries (Australia, Canada, France, Germany, the Netherlands, New Zealand, Norway, Sweden, Switzerland, and the UK), the US did quite well in a few areas. Older Americans rarely had to wait over a month for an appointment to see a specialist (only 14% reported such a long wait, compared to more than half of the respondents in Canada and in Norway). Fewer American elderly patients reported problems related to discharge planning after hospitalization—issues such as inadequate follow up or lack of information about their medications (28% did have problems, however, but this compares favorably to 70% in Norway and 67% in Sweden). And despite all the discussion in the US about the lamentable state of advance care planning, far more American older patients reported having had a discussion with someone about the care they would want if they became very ill and could not make decisions for themselves than did their counterparts in other countries (78% of Americans said they had had such a conversation, compared to 20% in Norway and 12% in France). The majority of Americans (67%) said they had designated a health care proxy, whereas the percentages were below 10% in Scandinavia and in the 25% range in New Zealand, Switzerland, and the UK. 

And then the bad news. Despite universal coverage, a sizable fraction of older Americans have substantial out of pocket expenses for health care, expenses that they often cannot meet: 19% said they had cost-related access problems in the past year, 21% said they had out of pocket expenses of $2000 or more, and 11% said they had trouble paying their medical bills. The corresponding figures in all the other countries were far lower except for Switzerland, where patients reported high out of pocket expenses but said they did not have problems paying them. In addition, nearly a quarter of American older patients reported that test results or records were not available at their appointment or that duplicate tests were ordered; this occurred far more rarely elsewhere. Getting a next day appointment when they were acutely ill was difficult for Americans, making them worse off than patients in France, Germany, the Netherlands, New Zealand, Switzerland and the UK—and leading to excess use of emergency rooms.

Finally, the surprising news: older Americans reported higher rates of chronic disease than anyone else: fully 87% said they had at least one of seven major conditions and 68% had at least two. By contrast, only one-third of older adults in the UK said they had multiple medical problems. Either Americans are more knowledgeable about their medical problems (the entire survey depended on self-report), or Americans are just sicker.

Interestingly, all the patients interviewed were pretty happy with their medical care: most everyone felt the doctor spent enough time with them and that they had a plan for self-management of their disease.

So what should we make of all this? The report is based entirely on computer-assisted telephone interviews of a random sample of people 65 and over. Relying on self-report may give a biased view of the medical care these patients actually received. But at the very least, the report offers the opportunity to look at what’s different in the health care systems in which patients are very satisfied with their care. England, for example, outperformed the US in self-management of chronic conditions and in England, the vast majority of primary care practices used nurse case managers or navigators for the patients with the most serious problems. France, which had particularly good care coordination, has a special program that incentivizes primary care physicians and specialists to develop shared care plans. In countries with better access to care, it is either free at the point of service or free for most chronic conditions, or subsidized for low-income individuals. 

If we have the humility to acknowledge that we’re not always the best, maybe we could learn something from our friends.

US vs Them

This is how the US compares to other OECD countries in education; for a report card in healthcare for older patients, see blog posting this weekend.

The Hardest Job

When I searched the web for images of "caregiving" and "dementia," all I found was pictures of happy people: happy men and women who supposedly had dementia together with their happy family members or with hired caregivers:

The reality is very different. All caregiving is difficult. Caring for people with dementia is specially difficult. And caring for people with dementia and behavioral problems is really tough.

A staggering 52 million Americans care for an adult with disability or illness. They do all kinds of things for their relative, most often a parent or sibling, including taking on medical responsibilities. In addition, many have jobs outside the home, sometimes full time jobs. Caregiving takes a toll on their physical and mental health: it is associated with depression, isolation and even, in some studies, an increased risk of hospitalization and death. But a recent report that is a spin-off of the previously issued survey, HomeAlone, brings home the magnitude of the challenge for caregivers of individuals of people with dementia and difficult behaviors.

What makes taking care of someone with dementia and behavioral abnormalities so difficult is that these individuals are sicker than other adults. Along with behaviors such as pacing, wandering, spitting, refusing care, and sometimes smearing feces or hitting, they have heart disease and lung disease and other chronic illnesses. Figuring out that someone is feeling short of breath or having pain, the kinds of problems an older person with chronic disease is apt to develop, is very hard when that person cannot express what he or she is feeling. Once you’ve determined what the problem is and what you have to do to help, you have to struggle to do what's needed--things such as putting on an oxygen mask of giving an injection. And odds are, you will need to do a lot: fully 68% of those with dementia and behavioral problems have high blood pressure or cerebrovascular disease, 58% have some kind of musculokeletal disorder (most commonly arthritis), 45% have a cardiac problem, and 32% have diabetes. 

As the caregiver for someone with dementia and behavioral problems, you are even more likely to need to do all those medical things that other caregivers report: wound care (33% of caregivers report doing this), medication management (85%), and operating medical equipment including home dialysis, a ventilator, or an oxygen machine (20%). The caregivers surveyed in the new report indicated that they found dealing with wounds and providing incontinence care among the hardest things they had to do—and that they had little or no training. They also reported a significant effect on their quality of life.

The report concludes with several common sense recommendations: provide respite for caregivers, offer training in responding to challenging behaviors, and educate clinicians to ask about caregiver distress. But I would add one more recommendation: help caregivers partner with clinicians to identify and manage common acute medical problems. Precisely because people with complex dementia (that is, dementia that causes behavioral issues) usually have other medical conditions, they are at high risk of being brought to the Emergency Department or being hospitalized. And the hospital is often a risky place for older patients with dementia, as I have often argued in this blog. Moreover, many patients with dementia probably would not want hospital care—if they could understand the inevitable downhill trajectory of their underlying condition, and if they had a viable alternative. Care at home is a viable alternative, but only if we educate caregivers so they are able to manage medical problems at home. 

Giving caregivers the knowledge and skills to provide home medical care, would improve the quality of life of their relative with dementia, would likely alleviate their own stress by allowing them to feel in greater control, and would save money. So why aren't we doing anything to help?

The Heartbreak of Home Care

Caregiving for someone with dementia: how is it different? Coming soon...