Who is the Patient Privacy Act really protecting? Is it the hospitals, health insurance companies or the substance abuse locations? How many times do they see patients leave knowing that, when they walk out, they will be back again? Why not? How can ten days be enough time to help an alcoholic after years of drinking?
In 2004, our family realized that the decline in my daughter, Lori’s, health was caused by alcohol abuse. We learned this when she voluntarily entered the Gosnold Rehabilitation Center in Falmouth, Massachusetts. She was thirty-seven years old. By then, her physical signs were obvious; she had lost considerable weight, her feet caused her so much pain that she couldn’t wear shoes and was in slippers most of the time, and her hair was so matted she couldn’t comb it without pain.
At that time, Lori informed me that she was also bulimic. I thought her weight loss was from the stress of a broken marriage, losing her job and her car to repossession, and losing her home. She said her doctor had told her, nearly a year earlier, that her liver was so bad that if she continued drinking, she would only live another two years.
Her doctor wanted her to get on a liver transplant list, but she refused. (Before she could even be put on the list, she would have to be sober for a year). If we had been allowed to consult with her doctor, we might have been able to convince her to get on the program for a transplant, and help her with organizations to curb her drinking; she never fought her family when we talked to her about getting help. She kept us in the dark by always saying things were fine.
In 1985, her father, Richard Lopes of North Dighton, died of cirrhosis of the liver, caused by his alcohol addiction, at forty-five years of age at the VA Hospital in Providence, Rhode Island.
For two years, family watched Lori enter the Butler Rehabilitation Hospital in Providence, Rhode Island, and again for the second time at the Gosnold Rehabilitation Center. All three times during her recovery programs, we wanted to get involved in her counseling and doctor’s appointments but The Patient Privacy Act gave Lori the right to refuse. I knew deep down that a lot of her problems came from our alcoholic family life.
I believed Lori had been too confused and feared opening up with her counselors about things in her past. Her sister, Debbie, and I could have helped her to understand more about what happened when she was too young to know what was going on. We were not allowed into counseling sessions. For some reason, Lori would not talk to Debbie or me about her problems. We had hoped that family counseling would have helped her open up.
Alcoholism is called a “Family Disease” but it isn’t treated that way. We have AA meetings, Al-Anon and Alateen going on with every family member (the addicted, the husband/wife and the children) all going to different locations to discuss the same family problems from substance abuse. These serious issues include confusion, fear and physical abuse. Don’t you think doing this together would make more sense and be a more powerful tool in helping the alcoholic to recover? We are all sick when living in an alcoholic atmosphere.
Al-Anon told me for four straight years to go on with my own life and that my husband may have to reach rock bottom before he reached out for help or came out of denial. His rock bottom was his death, as was his daughter’s. I tried to control my husband’s drinking and abuse toward me, instead of protecting my two daughters by removing their father from the home.
Believing in Al-Anon and trying to hold the family together, I finally fell apart and had a small breakdown from the stress pushing my body and mind beyond what it could take, while waiting for a once-loving husband and father to admit he was an alcoholic and needed help. I enabled him and unknowingly pushed him deeper into his addiction.
I’m sure there are rehabilitation centers that are helping every family member. For the ones Lori attended while trying to recover, we would be informed by her counselors of the dangerous stage her liver was at, how fragile she was and the importance to her survival for her to be in a long-term 90 day program. I actually begged to get into counseling with her only to be told I couldn’t override the Patient Privacy Act.
It took two years to get Lori to sign herself in for the 90 days. Less than three weeks into her program the location gave her a choice to finish the time or go into a halfway home. What do you think she chose? She was just starting to open up to her sister and children.
She left for the halfway home and was kicked out after two weeks for staying out late. There was no director or staff member staying at the location as there were at the rehabilitation centers. Eight months later, on November 22, 2006 at thirty-nine years of age, two days before Thanksgiving, we had to make the painful decision to take Lori off life-support. She was put to rest beside her father at the St. Patrick Cemetery in Somerset, Massachusetts.
Once she died, I was allowed to purchase her counseling reports. Each page had me in tears, learning the pain my daughter was going through during her two years in recovery. Lori admitted not knowing what actually happened in her younger years and said she lived in fear all her life and couldn’t understand why. Incidents I could have helped her understand. I was left with the horror of learning that Lori alleged her father had abused her. She had never talked about the incident.
This is what the Patient Privacy Act protects? Are you serious! Secrets that make a sick patient go deeper into mental confusion instead of getting the help from their family; or, as in our case, giving our family the opportunity to work with counselors and doctors so we could have helped Lori face her past and present problems, along with her bulimic illness, and have a brighter future with recovery.
When Lori was a patient at the Charlton Memorial Hospital in Fall River, in her last three weeks of life, family was allowed to get all daily reports from the doctors on Lori’s condition. In other words, when they concluded that there was little or no hope for Lori at this stage, then we could be pulled in to know her every day detail of declining health. Two years before, when Lori had been told her liver was giving out, was the time we could have had a better chance of saving her. Now they gave us the right to make a decision with her life by pulling her off life-support. I watched my daughter take her first breath at birth and her last at thirty-nine years of age from a habit and action that each of us might have been able to help her fight.
On April 5, 2011, my husband, Al, and I met with Stephen Meunier, the Policy Advisor to Senator John Kerry of Massachusetts in Boston. Our initiate was to modify a change in the Patient Privacy Act, to allow immediate family (parents, and/or siblings) access to medical information which can be used to help a substance abuse patient get the proper treatment, primarily when a physician determines that the patient maybe in a life-threatening situation because of their addiction. We believe that the patient should have the “right to privacy,” but as the law stands now, it can actually be detrimental to their health and well-being. We believe it defeats the purpose.
Once alcoholics have come this deep into their addiction, we believe they are not mentally capable of making clear and healthy decisions with their treatment or not needing the help from family. This procedure in modifying the Patient Privacy Act is still active.
After Lori’s death, I have become a private and public speaker at alcoholic rehabilitation centers, halfway homes, businesses, organizations and schools to speak on “The Effect of Alcoholism on the Whole Family.” I offer a deeper talk to the alcoholic and addict patients.
I wrote about our lives in Someone Stop This Merry-Go-Round; An Alcoholic Family in Crisis and its sequel Please, God, Not Two; This Killer Called Alcoholism. I’m now working on a book for alcoholics and addicts that will be written by them. I want to learn what is and isn’t working in their recovery programs. It will become their book. Hopefully, it will help doctors and counselors learn a better way of helping addicts. If something isn’t working, we need a change. This has become a worldwide problem that is completely out-of-control. I am also looking for supporter to follow me in the future to Washington, DC to fight for a change.
I started a petition to modify the Patient Privacy Act. The full petition can be reviewed and signed at hereOn Thursday, May 17, 2012, I presented a speaking engagment on "The Effect of Alcoholism on the Whole Family" at the Brockton Community Corrections Center in Massachusetts. It had been my third time back to give a talk. I spoke at 10:30am, 1:30pm and 5:30pm.