Ila Swan: patient advocate


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November 16, 2000

Why I Became a Nursing Home Advocate
by Ila Swan

 I did not set out to be an advocate, it was forced on me while trying to protect my mother in one of our city’s finest nursing home. I tried the partnering role with that fine nursing home and guess what, it didn't work.

I tried the ombudsmen, who promised to keep my name confidential and then told the DON not only my name but every detail of my conversation. I tried the department of health services, who wrote “ unable to substantiate your complaint” on the 11 complaints I filed. I tried my senator, and after three months of no word from him, I checked his campaign contributions and found he took $22,000 from the nursing home industry the very month I filed my complaint.

I filed charges with our county grand jury, who not only verified my 11 complaints but added 15 more to the charges and then they were told by the county attorney that they had no jurisdiction over nursing homes who were under state jurisdiction. They were forced to turn over all their investigative information to DHS, who in turn reversed their findings of unsubstantiated on my complaints, to 9 deficiencies and 2 citations.

The first citation was a B citation for retaliation. In our state if it is a B citation and $1,000 fine or less and the first of its kind in 12 months, the fine is automatically dismissed. The second citation was for mother's bedsore for $7,500, and because the facility agreed to pay the fine within 30 days, the AG [attorney general] reduced the fine to $5,600.

After a speech in a public meeting, given by the owner and administrator of the facility who stated, “I never have paid a fine and I never will,” I went to the AG's office to get a copy of his cancelled check for the $5600 and lo and behold, he had never paid the fine and the AG had no intentions of collecting it. I checked to see how many fines were outstanding in our state and found over $2 million in fines billed for citations and only $19,000 collected. I have been in over 600 facilities in five states and found only seven I would put a family member in.

I have watched in awe as Beverly Enterprises was charged with defrauding public funds to the tune of $460 million and June Gibbs Brown [Inspector General of the U.S. Department of Health and Human Services] collected only $175 million. Not a word said about the ghost employees or the phony nurses’ sign-in sheets of employees who were suppose to be in the nursing home giving our loved ones care. Not a word about the lack of care due to these ghost employees. Likewise with Vencor and the others charged with defrauding our public funds.

I worry over what will happen to employees and their families when I listen to dozens of them tell me they blew the whistle on bad care in their nursing home and now find themselves unemployed and learn that the nursing home has called every facility within 50 miles of where they live and told the other nursing homes not to hire this troublemaker.

I choke when I see these nursing home CEOs and owners admit they set out to defraud our Medicare system, yet our DOJ [Department of Justice] does not send them to prison.

I marvel at how broke these nursing home chains claim to be, yet they continue sending out campaign contributions in the millions and continue paying their CEOs and board members millions in bonuses, stock options, perks and salaries and charge us taxpayers these fees, stating this is all part of the cost of doing business. But they simply can't find the money to pay a decent wage for their employees.

I grimace when I see the chair of AHCA [the American Health Care Association] stand up and say these are isolated incidents when thousands of horror stories in our nations newspapers and on our nightly TVs appear and they lose case after case in our courts of law.

I get sick to my stomach when I hear [past AHCA president Paul] Willging and [current president Charles] Roadman saying, “We want these bad performers out of the business,” but I challenge you to tell me one that your industry has moved against to put them out of the business, no matter how bad they are or how bad their record of performance is going back for years.

I am still aghast at collecting 26,000 death certificates of nursing home residents, showing the causes of death from starvation, dehydration, fecal impactions, bedsores and urinary tract infections, then randomly calling 200 family members listed as the next of kin on these death certificates and listening to over 150 of them tell me one horror story after another about the lack of care for their deceased loved one. Then taking all this information to the Senate Committee on Aging and sitting through three different congressional hearings that charged 30% of our states nursing homes were causing actual harm, death or serious injury to their patients and still no one goes to jail and it still continues.

I listen to our representatives talk about these problems while stuffing their pockets with the campaign contributions and wonder why it took nine years to decide a staffing ratio was necessary--and still find no staffing ratio in our laws.

I cry when I go into a facility and have someone's loved one grab my hand and beg me to take them home with me. I have nightmares when I see a patient with a bedsore full of maggots or half their back eaten away from a bedsore or watch them struggle to breathe because their blood has thickened because someone forgot to give them water and now their blood is not carrying enough oxygen to allow them to breath without gasping for air.

I wonder if the victims of the Holocaust could have looked any worse than some of the human skeleton's I see in many of the nursing homes I have visited.

I laugh when I am told the nursing home has a picture of me up on their wall in the break rooms, telling the staff I am a very dangerous person.

I feel outrage when looking though a dozen restraining orders filed against family members whose only crime was filing complaints for deficient care with the proper agencies, and your providers accuse them of “disruption of care in the facility.” THIS IS INHUMANE. Let me also add to my outrage when remembering the suicide of Mary Hochman RN, a wonderful nurse who had the audacity to file a declaration of statement of fact in a beating of a nursing home resident, and let me ask you: How many more of these atrocities can be attributed to your wonderful providers?

I pray at night, asking God to come quickly to serve these people with final judgment and justice, and I wonder why they have no conscience and why they don't fear meeting their maker. You think we advocates are terrible people because we don't want to partner with your providers. We advocates condemn you for not giving proper care to our loved ones.

You certainly know how to give proper care, you do it each time you go through your yearly survey.

Ila Swan
[former] California Executive Advisor for [the former] Association for Protection of the Elderly

Largest Nursing Home Chains Ranked by number of beds as of January 1999 

Ila's List of things families, advocates and volunteers should look for in a nursing home

How to file an appeal when the nursing home over-sight system tells you your complaint is 'unsubstantiated or 'no deficiencies found