In the first week of February 2013 my veteran had a therapy appointment. On that day he was having one of his “sleep attacks” during which it is difficult for him to stay awake. I took him to his appointment anyway. During the appointment he had trouble staying awake. His therapist ended the session early and went to talk to my veteran’s psychiatric NP about what was going on. He knew this was not normal and we had no idea what it was. His nurse practitioner (NP) came out and looked him over and suggested going to the ER downstairs. My veteran was reluctant but felt like it was necessary because his therapist and NP suggested it. His NP stayed after her scheduled hours to walk with us to the ER and inform the triage nurse that my veteran’s condition was NOT due to a drug overdose (even though what my veteran was experiencing seemed like it--his NP and therapist knew better, which was why they were so concerned). The NP talked to the triage nurse to notify them it was not an overdose so they could spend their time figuring out the cause of his extreme drowsiness and inability to stay awake. From there it went downhill.
The triage nurse did not write down that my veteran’s NP accompanied him to the ER or even spoke to her, let alone the content of that discussion. The ER doctors proceeded to treat my husband as if he had overdosed on his medication. They gave him two doses of Narcan and stopped because it wasn’t working (he wasn’t staying awake). During this time, one doctor came in to talk to me saying they were not sure what was going on and that they believed it was an overdose. I told him this had happened before he was ever on the medication he was taking at the time. The doctor’s eyes got wide and he left to try to figure it out. I had to leave the ER for the night so that I could get some rest. I believed my veteran was in a safe environment, but he wasn’t. During that time the ER staff put in an unnecessary catheter. In addition, one ER doctor started berating him. He was rudely asking questions like “So, how many pills did you take?” and “Did you overdose on purpose?” all while my veteran was unable to stay conscious or defend himself. This doctor didn’t do anything but accuse my veteran of wanting to kill himself or being irresponsible with his medication. Even now I feel incredibly guilty for leaving my veteran that night where I was unable to protect him from this cruel doctor who saw him as nothing more as a drug addict or a suicidal young man. Because of my veteran’s treatment in the ER he is still hesitant to go to the VA’s ER and avoids it at all costs. He is terrified of being labeled as a drug seeker or addict, doesn’t trust that the ER staff believes him when he says something is wrong, and is afraid to be treated as a number rather than a patient suffering. For example, he has put off going to the ER for an infected tooth which caused his face to swell and excruciating pain. I worry if something horrible were to happen would I be able to convince him to get help now…which may have an effect on his very life. I pray to God nothing horribly serious happens to my veteran because he may not allow me to take him in to get the help he needs…
After two days in the ER, the ER staff had him moved to the ICU. They had no idea what was wrong with him and were really concerned for him. Even though a drug overdose had been ruled out by two trials of Narcan, the ICU staff continued to treat the situation as an overdose. The head of the ICU was incredibly rude toward my veteran and would not listen to my concerns or his past history. As his caregiver, I have diligently gone over his medical records and know his case better than anyone. I was ignored and she never spoke directly to me. In addition, we have no idea who this person was because she did not have her VA ID showing, nor was she dressed professionally. Instead of wearing a lab coat like the other doctors in the ICU, she wore a hoodie. They kept him for a day or two. And during this time, did nothing for him. No tests, no exams, nothing. They blamed a drug overdose. So, they cut his medication and lied about what they were giving him. They did not understand his case, which became evident to us when they decreased his Lyrica by half, which is not a narcotic. They also told my veteran he was getting one medication and gave him another. On his last day, he asked when he could go home. The head of the ICU said, “You can go home today if you want. We have no reason to hold you.” My veteran also asked about what evidence they had for an overdose. The woman responded, “The only way we would know that is if we counted your medication.” Thankfully one doctor had listened to us when we reported it was a sleep issue and set up a sleep study. Other than that, the VA did nothing but hold my veteran until he was conscious, decreased his medication without really knowing what the medication was for, and blamed him for his present state. They sent him home and told him to follow up with his PCP and keep his appointments already scheduled at specialty clinics. My veteran left the VA anxious, angry, and without feeling cared for…little did we know this would affect his care for MONTHS afterwards all because no one listened to his NP when he was admitted, his caregiver, or the actual veteran. They simply ran with their own assumptions and our family and my veteran suffered for it. It should be noted that the discharge diagnosis did not include “overdose."
A few weeks later, my veteran had an appointment with the pain management and rehabilitation services (PMRS) clinic. My veteran had tried to get into this clinic in 2012 in hopes it would help with his pain. The consult was cancelled because he received a spinal injection. The injection did not work, so we got another consult. The consult was put in BEFORE his trip to the ER. However, the staff members in the clinic were convinced that my veteran’s PCP put in the consult to get off his pain medication because of an overdose. This was not true, my veteran voluntarily wanted to join this program. But it did not matter, the staff continued to treat him as if he overdosed. Because of this, my veteran was stigmatized and discriminated against. The PMRS staff came into the appointments with pre-conceived notions of who my veteran was, what the problem was, and solutions for the problem. These appointments were far from patient centered. He was seen as a number, not an individual in pain. The staff members were also very apathetic and had a demeanor that my veteran’s pain was his fault. On several occasions they mentioned that his pain was due to his depression and that he should seek mental health counseling for his depression to reduce his pain. After this appointment, my veteran was left in tears in the waiting room cause he felt they did not believe he was in pain, the pushed his problem onto his other providers, and he felt they did not care enough to help him. Thankfully his therapist was walking by at the time, took him back to talk to him AFTER HOURS, and became an advocate for him involving the PMRS clinic, his NP, case manager, and patient advocate. However, this did not improve things. The clinic continued to have a demeanor which blamed my veteran. They removed all his pain medication, offered few alternative pain control methods, invalidated my veterans pain, allowed him to suffer at pain levels between 8 and 9, and continued using condescending phrases while “treating” my veteran such as “well, we don’t have a magic pill” or “it’s not going to get better overnight” or “this is the end of the line” (for treating pain) and one even said “You look depressed.” They even implied that their job was more difficult for them than my veteran living with the pain every day. He was infuriated and stormed out of an appointment because he felt they were blaming him for not getting better. In that same appointment, I became so frustrated with their lack of care or effort that I began to break down and cry uncontrollably because they were just letting my husband suffer and put forth minimal effort to help him. At the end of the clinic, the pharmacist admitted his best option may be pain medication and told us to talk to his PCP.
My veteran spent 5 months in the clinic. His pain increased from a level of 5 on good day (with pain medication) to a level of 8-9 constantly (without medication and trying the few methods of pain management the clinic offered). He suffered with this pain for months and was stripped of all hope to live with less pain due to their lack of effort, concern, and common statements of “this is the end of the line.” Due to his intense pain he was unable to participate in family time…he missed meals, couldn’t play with our 2 year old, couldn’t go out, became secluded and isolated, and his depression worsened because of it. My daughter and I missed him, even though he was physically present all the time. Pain took up so much of his life, that he didn’t have time or energy for anything or anyone else.
The next step was to go to the PCP…when we attempted to make an appointment, the request was first denied because we were moving to a new VA. However, we had not moved yet. So I called again and talked to the PCP’s nurse and she said that the PCP would not provide narcotics (like the pharmacist in PMRS suggested was his best option right now) because of the overdose. My veteran felt hurt and neglected by the one person who was supposed to guide his medical care. He felt the VA and his PCP had failed him. He felt it was wrong that one person who saw him for only a few moments could affect his care in such a profound way when two people (his therapist and psychiatric NP) who saw him every other week for a YEAR had no influence on the medical call no matter how much they tried to advocate for him. He felt defeated. He was left to suffer even longer until we were able to get a new PCP at a different VA at the end of August 2013. This one visit to the ER set his pain management care back TWO YEARS and we are only now starting to recover from this terrible mishap which should not have happened, and would not have happened if the staff at the VA saw my veteran as a patient in pain with a sleep disorder (we found out he had narcolepsy in the first week of August) rather than what they assumed to be a veteran with pain problems who was either addicted to his pain medication or wishing to end his life in an overdose.
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