Elder Care Doesn't Have to Resemble Prison

Regulations, fear of lawsuits prevent nursing homes from allowing patients basic autonomy


You wake up in an institution and are ordered out of bed. Though you would much rather sleep in for a bit, you have no right to dictate your own schedule. You are marched to a sterile, cold room where you will be served food you don't want to eat, seated at a communal table with people who don't want to be there any more than you do. Nearly all the activities that will make up the rest of your day will proceed in similar fashion, until "lights out" is called and you are commanded to a lonely slumber. With each passing day you are plagued by loneliness, helplessness, and boredom. This is all done in the name of your safety and security, not as punishment. You are not a prisoner; you are a "resident" of a nursing home.

As the boomer generation approaches its autumn years, the issue of elder care reform has grown in prominence. Over 1.3 million Americans live in nursing homes, but thanks to byzantine regulations designed to mitigate any risk to the physical health of residents (which take little consideration of the mental health of those same residents), many nursing homes can resemble minimum security prisons.

In response, The Eden Alternative, a Rochester, New York-based non-profit, has for two decades sought to de-emphasize "top-down, bureaucratic authority, seeking instead to place the maximum possible decision-making authority into the hands of the Elders or into the hands of those closest to them."

The Eden Alternative's CEO, Christopher Perna, told me in a phone interview, "It's almost militaristic, the way many nursing homes are run, where the administration is the top dog. They make all the decisions and the staff basically do as they're told." He adds, "it's very easy to settle into a series of institutional practices that keep you within boundaries that are defined by the government. It can lead to a very sterile, very lifeless environment."

This hierarchal approach to elder care developed out of nursing home operators' fears that their businesses could be vulnerable to government sanctions for failing to comply with broadly written regulations. Everything from requirements to confine certain residents to wheelchairs in order to mitigate the risk of a fall, to strict rules on food content and preparation are covered in the Medicare and Medicaid Program Conditions of Participation, which run almost a thousand pages. But as Marshall Kapp noted in a 2012 article in The Atlantic, "sometimes…the biggest barrier to culture change in nursing homes is not the actual wording of the regulations but rather the often inconsistent, incoherent, and uninformed way that the regulations are interpreted and enforced by government employees who regularly survey facilities and cite them for perceived noncompliance."

Kapp adds, "requirements that beds must be placed only within certain spaces in a resident's room make it impossible for residents to rearrange their furniture as they wish. Regulatory prohibitions on open kitchens prevent residents from fixing snacks whenever they wish. If we are serious about making nursing homes more comfortable and homelike, a review of existing regulations and amendment or removal of those regulations that impede culture change must be put into place."

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For his part, Perna says that for the past 20 years, he has worked with nursing homes to venture as far they can into the "grey areas" of regulations. His goal is to help "reinstitute a degree of autonomy" for both their seniors and their caretakers, which he says "is just a crucial factor for quality of life." Perna adds, "if residents want to sleep in in the morning, let them sleep in. If they want to be an early riser, let them wake up early. If they go to bed early, let them go to bed early. If they like to be a night owl, let them be a night owl. And adapt the organization and staffing approaches to the needs of the elders."

How has this approach worked? According to Modern Healthcare:

Data collected in 2011 from nursing-home providers using the Eden Alternative model showed the average occupancy rate of Eden-trained nursing homes was 93%, compared with the national average of 86%. The average annual turnover rate of licensed practical nurses at Eden-model facilities was 16%, compared with the national average of 39%. Average annual turnover of nursing assistants was 26%, almost half the national average of 42%…

A 2013 study published in the journal Clinical Interventions in Aging found the Eden Alternative model was associated with "significant improvements in residents' levels of boredom and helplessness." 

Another study published in 2007 in the peer-reviewed journal Federal Practitioner found that accidental falls and assaults by patients residing in the dementia unit at the VA Pittsburgh Healthcare System fell significantly following adoption of the Eden approach.

Eden Alternative patients are safer and healthier in mind, body and spirit. They are cared for by employees less likely to leave their jobs than in conventional nursing homes. The company provides advisory services to homes all over the U.S., as well as in South Africa, Australia, New Zealand, the United Kingdom, and Canada. They expect to generate $1.5 million in revenue this year from service fees and competitive grants, and take no funding from any government source.

Perna proudly describes his organization as a group of "social entrepreneurs," but expressed disappointment that they have thus far failed to gain a foothold in a somewhat surprising place: Florida. According to Perna, "back in the 1990s you could hardly pick up the newspaper without reading about a new lawsuit being brought against a nursing home by a trial lawyer." Consequently, many nursing home providers are "shell-shocked." While "regulators would get involved," it was really trial lawyers "using regulations as a hammer" which have prevented reform in a state known for its always robust retirement-aged population.

Only true regulatory reform, with policies that allow for residents and care providers to assume a reasonable amount of risk, will prevent predatory lawsuits from holding nursing homes hostage, and facilitate a widespread cultural shift in elder care. 

You've lived a long life, you've paid your taxes. The least you deserve is the right to arrange your room the way you like it, and occasionally make a snack without official permission from an officious authority figure.