On May 31, 2015, the Authorized Electronic Monitoring in
Long-Term Care Facilities Act
passed through both houses of the Illinois Legislature following almost four
months of revisions, subsequent amendments, and set against the backdrop of
recent scandals involving issues of consent and protection of adults suffering
from a variety of long-term or degenerative illnesses. Effective January 1, 2016, the new
legislation permits nursing home residents in facilities that are licensed under
certain state legislation such as the ID/DD Community Care Act or Nursing Home
Care Act to use audio or video surveillance in their room at their own expense. The Act provides various criminal penalties
for those persons that knowingly obstruct or destroy any device placed in one’s
room. Additionally, the legislation
gives the Department of Public Health authority to establish and distribute a
$50k fund for those in homes who would like to place monitoring devices within
their room, but would otherwise be unable to do so due to the facility’s financial
constraints. The law has been updated
and amended several times since its initial introduction in an attempt to
balance competing interests such as the rights of the family, potential
roommates, and facility. This leads to interesting policy questions regarding
the effectiveness of the proposed solution and how it could alleviate negative
circumstances but also further exasperate others in the long run.
Representative Greg Harris (D-Chicago) introduced the law as
House Bill 2462, with the legislation intended as a measure of security for
those who had concerns
about the safety of their loved ones in nursing homes. This is a direct
response to Illinois’ growing population of aging citizens, with the US Census
Bureau predicting that by the year 2030, approximately 22.3 percent of the
state’s population will be aged 60 and older.
Illinois currently has over 1,100 nursing home facilities housing about
76,000 residents.
While this legislation is something new for Illinois, the
state joins others in an effort to protect some of the country’s most
vulnerable citizens from possible neglect or abuse, giving family members peace
of mind that the difficult choice of placing their loved ones in such care is
the best possible way to provide them safety and the attention they may require
at this critical time in their lives. Illinois
is the fifth state to enact such explicit provisions, following New Mexico,
Oklahoma, Texas, and Washington, with other states such as Maryland providing
guidelines for facilities that may choose to voluntarily allow recording
devices based on the residents’ preferences.
The Illinois legislation tracks certain elements of similar
laws established in the other states that have enacted such protective provisions.
For example, in Texas
a resident requesting to have video recording in their room must give the
nursing home prior notice, release the home from any liability for violations
of the patient’s privacy rights, written consent from any roommate potentially
sharing the space, and adequate notice to other parties through some kind of
verbal indicator that they are also being recorded. The revised Illinois law also adds that a roommate
may request to have the recording device turned off at any given time period.
Such legislation regarding the resident’s rights in
long-term facilities is timely, given the various controversies erupting in the
media regarding quality of care, abuse, and neglect in nursing facilities. In Texas, many were infuriated by a news story
investigating three nursing homes in the wake of allegations of
abuse and neglect. The investigation
revealed evidence of hospice workers verbally and physically abusing residents,
leading many family members to file complaints and seek changes through
legislative reform to better protect family members.
Residents may also benefit from this legislation in equally
troubling ways: protecting them from their own family members. This was most recently brought to the public’s
attention in 2015 with the Henry Rayhons
trial, a man charged with third-degree felony sexual abuse against
his wife Donna Lou Rayhons, who had been suffering from severe Alzheimer’s
Disease. Mr. Rayhons’ eventual acquittal
in April 2015 raised interesting questions regarding sexual consent and
patients who may shift between lucidness and impairment.
Although Mr. Rayhons was advised by his wife’s nursing staff
that her condition meant she could no longer consent to otherwise un-prohibited
sexual activity, Mr. Rayhons allegedly continued to do so. Despite the acquittal, the case sparked debate
on what issues nursing homes had not developed clear standards on. A camera in Mrs. Rayhorns’ room could have produced
a different result. It would work the
same for other families whose own behavior may be inappropriate or harmful to
the patient in question. Cameras in
patient’s rooms can discourage and end inappropriate activity between residents
and their families.
While there are great benefits to the legislation recently
enacted in states such as Illinois, negative concerns regarding electronic
monitoring in patients’ rooms have sparked
debate on the issues like privacy concerns and quality of care. While some residents may feel more secure with
a camera stationed in their room, others may feel uncomfortable about the
living situation in general already. A recording device may further this
distress in terms of having what little privacy they have left taken away from
them, even if such footage or recording were never viewed anyway. Additionally, the nature of growing old in
itself brings up the time-old discussion of what it means to have, or die, with
dignity. Some residents may already
experience resentment for having to rely on others for basic life activities
such as bathing, feeding, or simply going to the bathroom. Having these experiences recorded for anyone
to potentially see may further undermine their pride and lead to negative
psychological issues at an already difficult time in their lives.
In terms of quality of care, having cameras in the rooms may
also affect the important relationships developed between facility caregivers
and their residents. The staff may
choose to rely on the cameras to monitor residents rather than engaging in
direct communication, potentially leading to mistrust and even a greater
substandard of care that such legislation was meant to combat in the first
place. Residents may never truly feel
comfortable without the bond usually fostered between the two parties,
contributing to a negative experience.
As such legislation regarding the rights and protections of
nursing home residents has only been recently developed and put into practice, making
it hard to predict what the true legacies of solutions such as the Authorized
Electronic Monitoring in Long-Term Care Facilities Act may be. Such legislation
is meant to be both remedial and preventative in light of the issues affecting
our increasingly aging population. However,
it may also be detrimental to those who the legislation was meant to protect in
the first place by affecting their quality of life in the long run. Upon implementation in the year 2016, how the
act is enforced by the various parties involved could contribute to mixed
results amidst conflicting policy interests. Until actually implemented, only time will
tell how these uncertainties will play out in Illinois, with only the
experience of a small number of other states to look to for guidance in light
of impending practical and legal issues.
Samantha Grund-Wickramasekera is currently a law
student and Jaharis Health Law Fellow at DePaul University of College of Law.
Ms. Grund-Wickramasekera completed her Bachelor of Arts at DePaul University,
double majoring in Political Science and Women's and Gender Studies, minoring
in LGBTQ Studies in 2014. She will complete her law degree in 2017.