Monthly Archives: December 2014

Public Act 98-0988: Nursing Home – Anonymous Complaints

 

Senate Floor Pano

Public Act 98-0988 Nursing Home – Anonymous Complaints
Name of Filing Sponsor: Dennis M. Reboletti (R) 45th District
Date Sponsored: 2/14/2014
Date Enacted into Law: 8/18/2014

Synopsis As Introduced
Amends the Nursing Home Care Act. Provides that a complaint regarding an alleged violation of the Nursing Home Care Act may be transmitted to the Department of Public Health by electronic means. Provides that when a person requests that the Department investigate an alleged violation of the Act, the Department shall require (instead of shall request) the complainant’s identifying information. Allows the complainant to request that his or her identifying information remain confidential or that the complaint be treated as anonymous, and requires the Department to maintain the complainant’s confidentiality or anonymity unless: (1) the complainant consents to the disclosure in writing, (2) the Department’s investigation results in a judicial proceeding, (3) disclosure of the complainant’s identity is essential to the investigation, or (4) disclosure of the complainant’s identity is essential for the purposes of investigating or prosecuting the complainant’s alleged knowing transmission of a false report to the Department. Effective immediately.
House Committee Amendment No. 1
Adds reference to:
210 ILCS 47/3-702

Replaces everything after the enacting clause. Amends the Nursing Home Care Act and the ID/DD Community Care Act. Provides that a complaint regarding an alleged violation of the Nursing Home Care Act may be submitted by electronic means. Requires the Department of Public Health to make information available, through its website and upon request, regarding the oral and phone intake processes and the list of questions that will be asked of the complainant. Requires the Department to notify complainants that complaints with less information provided are far more difficult to respond to and investigate. Requires the Department to conduct an annual review and make a report concerning the complaint process. Requires the Department to provide its report to the Long-Term Care Advisory Board and the Illinois Long-Term Care Council. Provides that the Long-Term Care Advisory Board and the Illinois Long-Term Care Council shall review the report and suggest to the Department any changes deemed necessary, including how to investigate and substantiate anonymous complaints. Makes similar changes in the ID/DD Community Care Act. Effective immediately.

 

I.  Introduction.  In Illinois, the care of our elderly and disabled in nursing homes falls under the Nursing Home Care Act.  The state functions to support quality in nursing home care not only through the professional licensure process, but through implementation of standards and on-site reviews by the Illinois Department of Public Health (IDPH).  In the context of the legal and regulatory weave, citizen complaints provide an important voice in alerting the state to potential violations in standard of care.   The complaint process must at the same time protect the identity of the complainant (and by de facto, the possible family member who may still be under nursing home care); acquire necessary and sufficient information to proceed with an investigation; and guarding against fraudulent reporting.  Public Act 98-0988 seeks to address these tensions by incorporating an educational component to the reporting process and by establishing an annual review of the complaint process.

II.  Brief description of the law:  The law provides for the submission of electronic complaints to the IDPH, provides for transparency of the complaint intake process, requires the IDPH to let the complainant know that complaints with “less information” are “far more difficult to respond to and investigate,” and includes an annual review of the complaint process.

III.  Discussion and analysis:
        1.  Allowing for electronic submissions of complaints.  This section facilitates and decreases barriers to submitting complaints in our electronic age.  Currently, the IDPH uses a complaint form, accepts emails (dph.ccr@Illinois.gov), and phone calls (Central Complaint Registry, 800-252-4343).

       2.  Transparency in the intake process.  Here, the law ensures that the complainant can see on the website, or receive, upon request, a list of questions to be asked during the intake process.  This assists the department in ensuring the complainant understands what information the department finds necessary, and provides the complainant with a reassurance that he or she is being treated with a fair and standard process.

       3.  A requirement to let the complainant know that “complaints with less information are far more difficult to respond to and investigate.”   Of the four sections of the law, this one has the most complexity.  The language “less information” is general and therefore vague.  It does not specify which pieces of information would lead to a case that is more “far more difficult to respond to and investigate.”  Certainly, communicating more rather than fewer details about the potential nursing home violation itself would help the IDPH respond and investigate.   As far as disclosing the complainant’s own personal information (name, address, telephone number), the law specifies that the IDPH uses this information to allow for “appropriate follow-up.”  Such follow-up may indeed be of help in an investigation.  However, it is not clear in what manner and under what circumstances communicating less rather than more of the complainant’s personal information would lead to a case that is “far more difficult to respond to and investigate.”  The law, therefore, incorporates unspoken and undue pressure on the family (by the threat of inaction vis. their loved one) to give up their right to confidentiality in order to get a satisfactory response and investigation by the IDPH.

       4.  Annual review process.  The law specifies an annual review of the complaint process with attention to outcomes for anonymous and non-anonymous complaints.  This will allow for ongoing understanding and improvement of the complaint process.

IV.  Summary and opinion: The law takes an educational and information-based approach to improving the complaint process.  The law furthers the quality and effectiveness of the complaint process by adding electronic submissions, public education on the state’s intake questions, and an annual review process. However, the section on the consequences of “less information” is problematic.  If the law is reminds citizens of the state’s needs for complete information, it should also remind citizens of their right to protection.  Both should go together for this law to be in balance and therefore effective.

V.  Recommendations:

I recommend the following:

-A review of the decision to include the “less information” section as a “notice” vs. as “[made] available through the web and upon request.”

-That the law be revised to inform the complainant not only that “complaints with less information provided are far more difficult to respond to and investigate” but also that “the Department shall not disclose the name of complainant unless the complainant consents in writing to the disclosure or unless the investigation results in a judicial proceeding, or unless the disclosure is essential to the investigation” or similar language (as provided in Sec. 3-702 (c) of the Nursing Home Care Act).

VI.  Final comment. Not yet addressed here is the issue of fraudulent complaints.  The law, as currently written, will have the effect of deterring fraudulent complaints.  It will do so, again, via the “less information” section, where there is an implicit threat.  The thinking is as follows:  “If you don’t give us (IDPH) your name, we might not follow-up.”  Since someone reporting fraudulently would not give his or her name, this will have the effect of weeding out frauds.  The problem, again, is that the law will also weed out or cause undue stress to families with legitimate complaints but too afraid to give up their right to confidentiality.

The challenge is to rethink who we are as a people expressing ourselves through our legislation.  Do we squeeze out the vulnerable in order to squeeze out the criminal?  Or is there another way?  Our country has always supported the rights of the few.  This law can be improved with that in mind.    

Resources

Central Complaint Registry:

Complaint Form

email:  dph.ccr@illinois.gov

Hotline: 800-252-4343

Monthly case: Undiagnosed Pancreatic Cancer

Rathke pancreas safe viewWhat is shown?   The top photo shows the pancreas split down the middle (horizontally).  To the left is the tumor.  Next to the tumor is a circle.  This is a tube cut across.  It is the common bile duct (the tube that drains bile from the liver).  The tube is abnormal.  It’s too big (dilated).  It is roughly twice as big as it should be normally. To the right is the spleen (the red organ taking up about a third of the image).  Below, the photo is illustrated.  The split down the middle of the pancreas is shown with a dashed red line.  The tumor is outlined in black.  Two red arrows highlight the common bile duct. The spleen is labelled.

What was the story here?  This case was from an autopsy of a man in his 50’s who had cancer of “undiagnosed primary.”  This means that he had cancer in his body but no one knew where the cancer started.  Specifically, he had cancer that had spread to his lymph nodes.  He had a biopsy of one of these lymph nodes.  Testing of the lymph node tissue showed that one possibility was that the tumor started in the pancreas.  But x-ray studies did not report a mass in the pancreas.  The x-rays showed the common bile duct was dilated, but no mass in the pancreas. The pancreas was never biopsied.

Why did the family request an autopsy?  The family wanted to finally find out where the tumor came from.  They were angry that no diagnosis had been made.

Why was the diagnosis not made here?  In this particular case, the tumor did not increase the size of the pancreas very much and, as mentioned, could not be seen on x-ray.  Some pancreatic tumors are not visible on x-ray.  These tumors are called “isodense.”  “Iso” means “same.”  So these tumors have the same density as normal tissue.  Approximately 10% of pancreatic tumors are isodense.  This means they cannot be distinguished in x-ray appearance from normal pancreatic tissue.

On the other hand, a tell tale sign of a pancreatic cancer is that it can pinch off the tip of the common bile duct and cause the rest of the duct to balloon out.  This happened here. But the finding was not considered in thinking about the possibility of a pancreatic tumor.

Lastly, the lymph node that was positive for cancer was in a unique place in the body.  It was above the left collar bone.  A lymph node here is called a “Virchow’s node.”   It is a tip off that the tumor could come from the pancreas.

So overall, there were three tell-tale signs to consider there might be a tumor in the pancreas:  the studies on the lymph node, the location of the lymph node, and the ballooned (dilated) common bile duct.  But because no mass was seen on x-ray, pancreatic cancer was not considered.  There was no consideration the tumor was hidden on x-ray because it was isodense; and, again, no biopsy.  This was a missed diagnosis.

How did the autopsy help?  The autopsy provided closure for the family because it answered an important question they wanted and needed to know: where did the tumor come from?  And it gave them a context for understanding the factors that went into the missed diagnosis.