Advocate For Addicts Needed In Hospitals

This is a mother and daughter sharing a story, and the hopes are that it brings awareness to help in Ending the Stigma of Addiction. To help get an Advocate for addicts in the hospitals to give “us” a voice.

Here is My Mother’s Nightmare when she needed to just be by her daughter’s side.

Recently my daughter (who has been battling addiction for 17 years) was hospitalized due to Endocarditis, pneumonia, pulmonary embolisms, and sepsis – all due to her heroin addiction.  Once admitted, she ended up coding but was ultimately revived. Throughout her six-week hospital stay, some of the medical staff treated her like they would any other patient. However, many doctors, nurses, and other medical personnel treated us both like we were pariahs.  The emergency room physician had immediately put her on IV morphine because he knew that she was in excruciating and unbearable pain due to her life-threatening condition, but things changed dramatically once she was admitted and transferred to a room.

The very first doctor that was assigned to my daughter walked into her room with a huge frown on his face. Without even introducing himself, he started berating her.  The first words out of his mouth were “I am NOT giving you any more pain medication because you are a drug addict!”  She was so sick, she could hardly move, let alone speak.  I politely said that she is in horrible pain, and that because of her high tolerance to opiates – the little bit of morphine the ER doctor put her on was at least helping to take the edge off.

I begged him not to deprive her of that small comfort, and he literally yelled back at me, “Are you aware of all of the drugs she tested positive for?”  I politely replied “Yes, she/we have been dealing with her disease since her father tragically died many years ago.”  I told him that she had put together many years of clean time before this relapse, and that she was just as worthy as any other patient he may treat.  He continued to argue that he didn’t care how much pain she was in, and that he wasn’t going to give her medication that is reserved for someone who didn’t “choose” their illness.

As upset as I was, I tried to reason with him that she is a wonderful person with a horrible disease and should be treated like any other patient who comes under his care.  He yelled, “If you know so much, what have YOU done about it?… Do you even know about AA?”  I was flabbergasted and told him that not only have I learned all I ever wanted to know about this disease through the many years of her rehabs and hospitalizations, but that I was also going to college for Alcohol and Substance Abuse Counseling, so “Yes, I know all about AA, NA, and many other treatment approaches that are out there.”

Not considering that my daughter and I were told that she most likely would not survive her current medical condition, this doctor continued to belittle us both until he stormed out of the room making it clear that he wasn’t budging on the subject.  I was in utter shock, and something needed to be done. Therefore, I went to the front desk and asked a volunteer if they would kindly direct me to the office for a patient advocate.  I was told that there was no such office, and no such advocate for addicts on or around the premises.  So, I proceeded to hunt down the Director of Physicians, and calmly informed him of our experience.  He said he would see what he could do.  By the time I collected myself and made my way back up to her room, she whispered that the same doctor had come back into her room, leaned over her bed, and said “so your mom had me removed from your case, I hope you’re happy!”.  He was nothing but a bully!

The next doctor disclosed that he had a niece who suffered from the same disease.   He put her back on what little pain medication that was originally prescribed and was wonderful for the next three days. Unfortunately, for the rest of her six-week stay, my daughter was assigned a different doctor every two or three days.  Some were compassionate, but most weren’t.  Some treated her like she was worthy of saving, and others treated her as if they were wasting her time.  We both kept asking if there was anyone on staff that was educated or knowledgeable about addiction, an advocate for addicts.  Unfortunately the answer was always a big “No”.

We finally asked if she could speak to a psychiatrist.  A few days later one came to see her, and we both explained to him what was happening. We also told him how the heart doctors who originally said that my daughter would need emergency open-heart surgery had all but disappeared.  To our surprise, the psychiatrist went to great lengths to explain to us what was happening.  He said that he wished there were addiction specialists at the hospital because medical doctors are only required to dedicate a few hours of their entire education to learning about substance use disorders, but there weren’t any on staff.   There was no one to advocate for addicts on staff.

He went on to explain that since many doctors don’t understand the disease, they would rather not have addicts as patients. He said they are used to fixing” their patients, and that addicts are “hard to fix”, and “most of them leave to go back to using anyways”.  We were surprised (but grateful) that he was being so frank with us.

It was then that he disclosed that one of his family members were also suffering from addiction.  He went on to say how frustrated he was that there was ZERO help for addicts in the hospital.  Additionally, that this was a huge problem not only in this state, but the entire country. It was sad to hear this reality, but it has given my daughter and I the motivation and determination to help eradicate the stigma by dispelling inaccurate information, and countering pessimistic mindsets regarding substance use disorders.

This is My Experience while in the Hospital.

My first memory when I was in the hospital was me slowly opening my eyes to find a doctor leaning over my bed.  I can still see his face in mine saying with a belittling and intimidating attitude “Have you had enough yet!?”. At this point I was very “grave” and in excruciating pain and facing the possibility of death.

I was still trying to comprehend everything that was going on.  All the while trying to accept the fact that this may be the time that I actually may die as a result of my disease. I had already beaten myself mentally and physically bad enough.  And then finding myself hearing a doctor’s attitude, a doctor whom has my life is his hands belittle me even further. It truly frightened me.

Honestly, I even believed I deserved to be treated that way. He began to scold my mother as I laid there. He began saying things like “Are you the Enabler?” “What have you done to help?!”. I felt helpless as I watched him completely berate and teardown my mother as she was ALSO possibly facing the fact that HER daughter may too be dying.

He had NO idea of our story. He had no idea the great lengths my mother has gone to find help for me while I was in the deepest part of my addiction. She is a mother WHO has done everything to try to help me achieve sobriety. As badly as he was treating me he was also treating my mother just as badly. Someone who did not deserve to be treated that way. I was the addict.

He proceeded to yell at me, “I am not going to give you pain medication that I give to Cancer Patients.” However, I was in the middle of dying from MRSA that was painfully eating away at my organs. Pulmonary embolisms that were lodged in my lungs causing fluid to capacitate my breathing inflaming my lungs and embolisms in my ankle eating way at the joints. The list goes on for my pain all the while dreadfully beginning to detox on my literal death bed.  This doctor let me know with no hesitation that I did this to myself.  Additionally, how he had no intentions of letting me be even slightly comfortable. I remember my mom hearing my breathing and seeing the amount of pain I was in. My body had been in such pain that I finally had fell asleep for a little.

When I woke up I remember my mom walking through the door, and I could hardly talk.  But I was able to muster out “Where did you go?”.   She began to tell me that she went to talk to the Director of Doctors, to explain my situation.  Her intention was to also have that doctor removed from my case.

In the meantime, we were informed that pain medications were very necessary for me at that point regardless of being an addict or not. It was doing more damage, and even lessening the possibility of having the antibiotics help restore and remove the vegetation from from heart.  The pain medications would also help me to not go into cardiac arrest.  Finally we had somebody, a doctor, on our side that saw me as a human being that was in dire pain. That was a start. Eventually the antibiotics began to work, and the pain medication helped my breathing become a little more bearable.  Soon after I began physical therapy to start walking again.

Every couple day the Doctors would switch. I finally got one doctor that was compassionate and understood a little bit more.  With time he got to see that I was a good person too, and not just an addict. So then I would feel hopeful. But then, 2-3 days later I got another doctor who would just immediately cut me off the morphine without a tapper or warning. Without even reading my file and learning the backwards effect it would have on my progression. Then a few days later another would look beyond my addiction.

This went back and forth every couple days. I knew that my luck would run out, and I would have to face another doctor or nurse that would be rude to me. A medical professional that would treat me differently or sometimes not even acknowledge me. That treatment, or lack of would literally shatter me. I had to accept that I am the addict. That I did this to myself.  And, I deserved it anyways.  But as I got better, I realized that didn’t want to die.

I wanted to be the happy and heathy person I was when I was clean and sober. But, I was so filled with hate for myself and disappointment.  And that mountain seemed too big. And I was isolated in the hospital with 0% percent of encouragement from the staff there. In my own crazy, sick mind with only a TV and 24 hours a day to think about everything I’ve done.  Everything I’ve done to myself and to the people I love. My thinking was the same as when I came in while in the grip of active addiction. That same thinking that got me there in the first place.

My mom and another family member put together a collage poster of pictures of my first sobriety.  The collage was placed on the wall to remind me of the sober path I’ve led before.  To remind me this path was still possible. When they put them on my wall in the hospital the Doctors and the nurse started looking at my pictures of me.  Pictures of me with my family and my son. Just a few started asking questions. I saw them become curious of my disease. They saw that I was your average women when was I healthy. I was a vibrant, smart.  Yes, even a well mannered human being.  Some of their attitudes and they way that they treated me started to change for the better. A psychiatrist came in for a total of maybe 15-20 mins to enlighten us on the perspective from the doctors.  And that perspective was a little scary, but at the same time understandable. Doctors and nurses are very busy.

I finished my 6-week course of antibiotics by the skin of my teeth. It was very hard.   Being an addict, and having to sit there for 6 weeks, with my frame of mind and with no support, was almost impossible to bear. I had a plan to go to rehab after… but that was only possible if I hung on to finish the 6 weeks of the antibiotic treatment.

I may be an addict, but I am still human.  Our Bodies still operate the same. I always wonder to myself, “what if I hadn’t had my mother there?”, to be my voice when I couldn’t speak. Or even because I am an addict that I deserve this.  There is a need for an advocate for addicts in our Hospitals.  Someone to help the doctors and nurses to communicate on our behalf, because let’s face it…. Nobody listens to “Us”.

End the stigma.