Mental Health/Discrimination/Diagnostic Overshadowing/Mortality/Medical Care 2015
by: Sheri de Grom
Why do I continue to question the ongoing discrimination of medical professionals toward individuals with a mental health diagnosis?
I see the defeat in Tom’s eyes when he tells me, “There’s no need to go to the doctor or even try; nothing will change.”
Given our experiences over the last two decades in finding both appropriate mental and physical health care for Tom, I shouldn’t have been surprised by the statistics reported in an exhaustive report, “Morbidity and Mortality in People with Serious Mental Illness.” This report provides a comprehensive review that provides an overview of recommendations and general call to arms by the National Association of State Mental Health Program Directors.
The study outcome – physicians and other healthcare clinicians are responsible for individuals with a mental health diagnosis dying 25 year earlier than those without a mental illness.
This 25 years does not include the number of deaths caused by other problems in the medical community or other deaths related to comorbidities of having a mental illness.
First on the list of ignored illnesses is unsurprisingly, cardiovascular disease. Two large studies from reputable research groups revealed that patients with both a mental illness and a cardiovascular condition receive about half the number of follow-up interventions, like bypass surgery or cardiac catheterization, after having a heart attack than did the “normal” cardiac patient.
Commonly overlooked chronic physical conditions endured by bipolar individuals include: migraines, irritable bowel syndrome and manual heart valve prolapse. No one knows why these diseases are most often connected but ignored.
Most shocking to me are the subtle findings in various studies that deserve special note. Although the numerous studies cover 29 countries, there’s no evidence of a difference based on the source population or geographic region being studied. The increase in mortality reported in all studies maintained a relatively high level of mental health care. Rather than finding a decrease, it appears that the recent improvement in life expectancy for the general population, such an improvement has not reached the population with mental illnesses.
Tom and I have often talked, he would have died long ago if it weren’t for me pushing and shoving the physical medicine department to care for Tom the same as they did for me. I demand the same respect and attention. This past year Tom was misdiagnosed for over seven months for a condition he did not have and if I hadn’t demanded, we’d still be in that deadly cycle. I believe we are beginning to see the light of having a new team for Tom’s healthcare but it’s been most difficult. As his wife and 24/7 caregiver, I would not give up.
According to a review of 4,650 patient profile studies done by the Institute of Psychiatry at King’s College, London from 1990-2000, 0ver 90% of people with a serious mental disorder–including bipolar disorder, major depression, schizophrenia and schizoaffective disorder–end up with a wrong medical diagnosis and are under-treated.
Our experience at yet another ER demonstrates clearly what often happens when an individual with a mental health diagnosis presents for medical help.
Tom had a harsh cough develop a week before Thanksgiving, 2014. He’s had this particular cough off and on for well over 20 years and we cope with it 2 to 4 times a year, every year, since it started. We’ve tried every suggestion tossed our way: every grandmother’s remedy, every witch doctor’s potion, ideas from fellow bloggers and even ideas shared over the garden gate. Nothing has worked.
I’ve accepted we’ll never have a diagnosis for his cough. Tom has undergone extensive testing to include 10 days in a hospital isolation unit where world-class pulmonary physicians tested him for every exotic disease imaginable. At the end of the 10 days they said they didn’t have an answer as to why he coughed or how to treat it. They admitted the cough was alarming but they didn’t know why the cough started or why it stopped. I continue my research with every new respiratory virus reported by the Centers for Disease Control (CDC) [and follow advances reported on old viruses] because I am Tom’s #1 advocate. Giving up is not an option!
The doctors dismissed Tom from isolation to home with an inconclusive diagnosis and no recommendation for follow-up. He doubled over in a fit of deep coughing as he was discharged from the hospital.
What I know as Tom’s wife is the severe coughing is one of the many medical conditions plaguing Tom and thus affecting his health negatively as well as our quality of life as a couple.
When Tom coughs, I grit my teeth, knowing I have nothing in my toolbox to help him. I don’t play the helpless wife well. I want results and I want them now! It’s a vicious circle day in and day out. The non-stop cycle of coughing throws him into dry heaves and many nights it’s easier for him to sleep on the bathroom floor. He no longer has the energy to make the trip from our bed to the bathroom.
What I do know is that Tom didn’t develop the cough until approximately 5 years after the
start of massive amounts of psychiatric medications. One of the advantages of having a detailed journal is being able to compare the specific start date of new medications and types of therapies along with any new medical symptoms.
What do I do now? The cough is severe: Tom falls out of bed and out of his wheelchair from coughing. He loses his balance from simply walking across the floor. I’ve had to make accommodations to insure he doesn’t get hurt while falling. Using a walker strips him of his dignity. My proud American soldier standing tall with squared shoulders beats himself up and I do what I can to ease the burdens haunting him.
At home, my precious Miss Priss, has become Tom’s safety net. Scooter, Tom’s shih tzu and constant companion is terminally ill and while Scooter still sleeps next to Tom, Scooter knows he can no longer be Dr. Dog for his master.
Miss Priss has been my constant companion for the past 8 years. She has a new job now. I rarely see Tom that my girl
Priss isn’t at his side. Because of Prissy I’m able to leave the house and work in the garden. If Tom needs me or if she even thinks Tom needs me, she bounces to the door and barks for me to come immediately.
I beg doctors to prescribe something to relieve Tom’s cough and they say, “I don’t feel comfortable prescribing anything, not with everything else he’s taking. How about gargling with warm lemon water?”
I want to scream and Tom will bow his head and say, “Please, just let me die.”
I spent 2 full days calling Tom’s doctors asking for help for his cough. I had to reach someone before all offices closed on a Friday night in late November, 2014.
Again, no one returned my calls and we were left at the mercy of the emergency room.
I’ve never believed a doctor should be fined by Medicare. However, if there is sufficient proof of notice that a patient requires urgent care and that patient gets no response from their physician shouldn’t that physician then be fined the amount Medicare has to pay for the ER visit and all ancillary charges? Those physicians, not returning my calls, were all on Tom’s medical team and had been for many years. The indifference I sensed drove me over the proverbial edge. Each of them knew of Tom’s failing health.
It was at this point in Tom’s treatment that I started putting together a new treatment group of specialists for the man I love. We’d gone through medical hell for the past 6 months and little did I know we had another 6 months ahead of us. Our saving grace was a top psychiatrist at the VA. He is still #1 on my list of doctors to ask what is best for Tom. He’s shown more respect and caring for Tom than any doctor we’ve had the pleasure of meeting and working with.
We’d discovered, over many years of trial and error, that Robutussin with Codeine would stop the violent bouts of Tom’s coughing. It allows the reflex muscles that cause the violent and non-stop cough to relax. Tom can return to living a life without constant dry heaves, but his body remains so weak that he collapses into himself whenever he stands up.
What we didn’t know until [6 months later] and through constant searching for a physician that honestly cared is that the years of Tom’s harsh coughing has caused such erosion of his trachea that it collapses and he cannot take the amount of air he needs into his lungs. I am enraged at the ongoing neglect demonstrated by the medical profession and by their refusal to help him.
The two primary specialists I tried to reach that Thursday and Friday in November, 2014, both knew the cough suppressant worked for Tom and that he was not a drug abuser. The only thing they had to do was call our local community pharmacy and activate a prescription kept on file for just such emergencies.
Not one doctor instructed his nurse to pick up the phone and place the call that would spare us the ordeal of the ER. I couldn’t allow the coughing to continue. Tom hadn’t eaten in well over a week, he could no longer walk unaided and his breathing was labored. It was obvious, none of Tom’s physicians were willing to help him and his psychiatrist couldn’t.
Here we were with the best health insurance available to anyone in the United States plus eight doctors on Tom’s acute care team and we couldn’t obtain medical care anywhere but the ER. Isn’t this what the so-called Affordable Care Act [Obamacare] was supposed to eliminate? The supporters claimed we would no longer need the ER. Surprise, the writers of the 2,000+ page document need to go back to the drawing board. But, I digress.
Arriving at the ER, Tom was placed in a transport wheelchair, the type without arms. I advised the intake that the transport was a potentially hazardous situation but they ignored me. Their behavior was nothing new. From Tom’s first ER visit all those years ago in 1987, we’ve been treated as if we knew nothing.
A mask covered Tom’s mouth and nose and perspiration gushed from his body. He’d coughed so long and so hard, he’d given up. I’d seen that look
so many times before. Your face can flat-line the same as your heart.
The five patients in the waiting room appeared as if they had been triaged by the intake nurse. Nothing was happening. Why the long wait?
Crash! Tom’s limp and coughing body tumbled forward out of the transport wheelchair onto the cold tile floor.
Why couldn’t anyone see this was an emergency? This accident should not have happened. I was horrified.
How could emergency room care be worse now than all those years ago when we frequented them due to Tom’s episodes of suicidality?
The answer escaped me that night as my mind raced. How can I help the man I love? I couldn’t take him home. We had nowhere else to go. Nowhere else to turn.
It hit me, it’s not just the doctors ignoring individuals with a mental health diagnosis, it’s everyone in the healthcare industry. Once an individual’s medication list is revealed during intake, the presence of a mental illness is obvious and discrimination begins.
From the moment I checked Tom into the ER on that dreadful night in November, 2014, he was labeled mental. The entire staff overlooked all of his other diagnoses. They didn’t care that his blood sugar was well over 400 because he hadn’t been able to keep a bite of food or liquid down in over a week. They didn’t care that he’d had a stint inserted in June 2014 because his previous heart surgeon neglected to tell us that his left artery was 100% blocked! Had we stayed with that particular surgeon, Tom would have died from what’s called the widow maker – cardiac arrest.
This discriminatory neglect by the medical community has become so severe, it now has a proper name. It is called diagnostic overshadowing.
That night at the ER, I knew we were being relegated to the same treatment that we’d received all those years ago in 1987, when we were seeking psychiatric care for Tom. This night we were seeking medical care but nothing had changed. We were being treated as second class citizens.
Why does this happen over and over?
After 1 and ½ hours we were taken to a treatment room. The nurse asked if Tom could walk. Where did she get that idea? After all, he was in a wheelchair and he’d already fallen once. Where were her eyes? Where was her medical training? Where were her human sensibilities? He didn’t have the strength to stand up.
We were taken to what might have been a storage closet in years gone by. Was Tom’s cough so worrisome they didn’t want other patients concerned about possible diseases on the premises? Unlike every other ER treatment bay we’d experienced, to include this same hospital, the room we were in was nothing like where we were now.
The nurse asked Tom to stand to see how stable he was and again, he collapsed into himself and hit the floor.
Three hours later the nurse returned to take Tom’s vitals. He was shaking so hard she couldn’t get an accurate blood pressure read, heart rate or other simple chart information.
Another hour passed as Tom gasped for every breath. His entire right side was shaking uncontrollably and I’d had enough. I went to the nurses’ station and found Tom’s nurse chatting with an EMT. I said, “I suggest you get the doctor if he wants to see my husband before convulsions take over his body!”
The ER doc was sitting with hands behind his head, kicked back in a swivel chair with feet on what should have been a sterile counter.
How dare he?
Ten minutes or so passed before the doctor made his way to our room. By now our little closet seemed like a holding cell for entry into hell.
The doctor burst into the room as if rushing from another urgent event. I noted his perfectly pressed black wool trousers and monogrammed French cuffs. His shirt, obviously not off the rack, hugged his body under an oh-so spotless and starched long white coat. This doctor was about to go off a 12 hour shift and didn’t have a wrinkle or a hair out of place. He could easily walk into a fashion shoot and be the go-to man for gallant, rakish and debonair.
The physician must have stayed the GQ man of the day by not getting close to his patients. He didn’t approach the narrow gurney my husband had been laying on for over 6 hours.
The doc turned to me and asked, “What do you need?”
“My husband requires the skills of a qualified physician!”
“Then let me phrase it this way,” he said, “What do you want?”
“I want a prescription for Robutussin Cough Syrup with Codeine.”
“What makes you think your husband isn’t having a panic attack?”
I couldn’t believe he had the nerve to ask that question. “I know panic attacks from personal experience and from going through them while Tom fought his own demons. If I’d thought this was a panic attack I have enough medication to treat it at home.”
The doctor didn’t say another word. He wrote the prescription as requested plus one for antibiotics (which we didn’t need) and signed off on Tom’s chart. The ER doc evidently hadn’t read the latest guidelines from the Centers of Disease Control regarding the over prescribing of antibiotics or the warnings from the FDA and various other governmental agencies.
In keeping with the new 2015 Medicare ruling of measuring quality care, this was the first time we had used Conway Regional Health System and had not receive a survey summary on how well our visit had gone. I found that interesting as we’ve received a survey for routine episodes such as lab procedures and a mammogram since that date.
Once again, thank you for reading with me. Do you have an opinion on why the medical establishment continues to ignore the needs of the mentally ill? Are you hopeful the current medical treatment of those with a medical condition and a mental illness will be equalized?