December 28, 2014

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.

1 comment:

Unknown said...

Thank you Dr. Gillick for yet another thought-provoking post.

Am particularly intrigued by your suggestion that assisted living facilities provide comprehensive assessments. This sounds useful -- for every older adult -- but hard to implement in real life, esp at scale. Who would do the assessments?