THE ABDICATION OF CARE GIVING
             (The author of this article chooses to remain anonymous)

 

A woman we will call Sarah has been very ill for a long time.  She has seen many doctors in the area seeking treatment.  This patient's condition is serious and she has been bedridden and wheelchair bound for three years. Her multiple health problems are almost all connected to a vicious, complicated syndrome Complex: FMS/MPS Pain Syndrome, that is, Fibromyalgia/Myofascial Pain Syndrome. One is a pain syndrome, one is a pain amplification syndrome. And this patient is allergic to ALL painkillers, except regular tylenol.

 

After dozens of tests, treatments and medications, her symptoms had worsened dramatically and her doctor, Michael F., could find no pathology responsible. He thereafter gave her only minimal attention and treated her with the assumption that her pain was psychogenic in nature. He made this incorrect and dangerous presumption because he admittedly does not know anything about FMS/MPS Complex even though he diagnosed it.

So Sarah bought two books on the condition, one for herself and one for Dr. F. so they could work together to understand what this Syndrome-Complex involved and find some treatment for it. Dr. F. had already informed Sarah that he knew very little about her condition (the one he diagnosed) but when she came to her next appointment with the book, Dr. F. laughed and said: "I'm not going to read that!" She finally persuaded him to at least keep his copy for reference.

Sarah's condition continued to grow more severe. She has now spent five years without one single minute of relief from constant debilitating pain. She spends several hours a day nauseated, coughing and retching, vomiting and having abdominal cramps and spastic IS a lot of the time; that is, when she is not confined to her bed or chair with the severe disabling pain.

Through her own research, Sarah learned that her condition is extremely severe although it is not terminal. She also learned that it is incurable and that all of the treatments and medications she has tried have failed, leaving her with very few options that might help.

Depression began to overtake her with this knowledge and the continued disinterest of her doctor. Dr. F. refused to seek any information about FMS/MPS, refused to listen to or credit what Sarah had learned and therefore left her without help or hope.

Seven thousand people a year kill themselves due to this medical condition and earlier this year Sarah was almost one of them. In the greatest despair born of pain and illness, complete disability and hopelessness, Sarah took an overdose of prescribed medicine in order to be free. Unfortunately[?], she was not successful.

Sarah was taken to St. Vincent's Hospital where she was treated by the ER nurse and ER doctor, one Dr. C., as well as the ER social worker, Nancy F., without even basic kindness much less professional objectivity. As a matter of fact, she was mistreated with anger, disaproval, threats followed by hours of being ignored, not even given the basic needs of food (Sarah is diabetic), water and bathroom accessibility.

Dr. C. prescribed in-care patient treatment. In other words, involuntary commitment to the psychiatric ward.  Social worker Nancy F. agreed and they both made this decision without knowing any facts about the circumstances or her illness. Sarah begged them to call Dr. F. and have him read ONE PARAGRAPH from the book on FMS/MPS. The information there would have saved her from commitment because of the nature of FMS /MPS (any change in environment, routine, temperature, diet or any additional stress factors will create dramatic inflammation of all of the existing conditions/symptoms of this syndrome and create new ones as well. So, hospital in-care treatment would only make her condition worse which would have been intolerable.

Dr. F. refused to spend five minutes to get the information he also needed in order to recommend appropriate treatment. He simply stated that he had done everything he could with no effect and didnt' know what else to do so he concurred that Sarah's "condition" required psychiatric care.

All of this diagnosing and prescribing was done without vital medical information that would have given the doctors the knowledge needed to make a responsible decision about her care.

She was finally released from ER on the condition that she enter counseling at the St. Vicent's Adult Pavilion the next day. When Sarah went there for the her appointment, she found that the "program" was a 9:00 am to 3:00 pm day-care kind of situation that included things such as group therapy, journaling, visualizing, making poster affirmations.

All of this"treatment" would be fine for someone who needed it. But Sarah needed treatment for her physical pain and disabilities which have an ORGANIC cause and are NOT psychosomatic. Aside from this obvious lapse of intelligent treatment, there existed the Very Real circumstances that such requirements would be impossible for an invalid. Something Dr. F., Dr. C., and social worker Nancy F. failed to take into consideration.

Sarah has since seen her second pain specialist. His experimental drug treatment also backfired and his recommendation was long-term psychological counseling not only for Sarah but also her husband and daughter, separately and together (he is a psychologist), antidepressants (which always have serious side effects and which she had already refused), permanent physical therapy, including water arobics.

Every single facet of this pain doctor's prescription was inappropriate and/or impossible for multiple reasons. So she stopped seeing him.

At that point, Sarah could not take any more medical "CARE". All she wanted was to minimize her increasing pain and stress. She needed rest, a peaceful environment and an end to the tests, treatments, medications and their side effects, doctors, nurses, technicians, therapists and the catastrophies they had created out of the disaster of her condition. So Sarah went home and followed her own prescription for herself and from that point slowly began to improve little by little.

Dr. F. had not returned the calls requested by him on the day following Sarah's overdose. But that was fine with her because she had enough of his version of care.  However, she was still dependant on him for all of her medications (seven of them) needed to treat various other conditions like spinal arthristis, hypertension, IBS, and diabetes. These were all prescriptions that Sarah had been on for years and they were essential. One of them is a schedule 2 medicine that is not a narcotic but required a written prescription for every refill. This medication was prescribed years ago for severe nausea and has since been discovered by the AMA to have a pain relieving effect. Consequently, even though her life may not depend on it, it is the most important medicine to her ability to function. But when Sarah had to call Dr. F. for a refill on it, she was informed in a loud, angry voice that he would NOT give her a refill until and unless she was in on-going psychological treatment. He would not discuss his reasons and refused to listen to her, saying "I'm not going to listen to this. Either you start and continue seeing a psychologist or I will not give you a refill."

This was Sarah's primary care doctor yelling at her in anger (about what?) saying he didn't want to listen to her and wouldn't give her the medicines she needed unless she followed his doctor's orders for psychiatric care. Since this medication is vital to her condition, she originally agreed, but after reflection Sarah decided that she needed a doctor who at least treated her with care and kindness even if he didn't know anything about FMS/MPS Complex.

So instead of complying with Dr. F.'s unethical coercion, she dismissed him and found a new highly recommended internist.

Sarah took two weeks gathering and organizing all of the material pertinent to her illnesses, including a six item minimalistic explanation of FMS/MPS Complex. Weak, exhausted and not looking forward to more tests and new medications, Sarah nevertheless showed up at Dr. Michael B.'s office early in July for her first appointment. She was surprised to find that she didn't have to fill out a medical history form before seeing the doctor. A first, but okay because she wanted a consultation first anyway.

Dr. Michael B. entered the exam room, greeted her, sat down and said: "We work very fast here, we have a very successful practice and we're really thankful for that, but it means we have to move quickly. (In the next 45 minutes) I'm going to take your family history, your medical history, a list of your conditions, symptoms, medications, allergies, treatments and surgeries. Then I'll give you a complete physical." Sarah suggested that they only "talk" on this first visit and make a later appointment for a physical because there was so much to cover. Dr. B. said no. He said that"talking" wasn't for a first visit. He actually snapped his fingers rapidly to illustrate his reitteration that he moved fast and didn't have enough time to listen to his patients explain their conditions.

Speechless at first, Sarah asked how he could know what was wrong with her without her explanation. He didn't answer her. He just began rapidly firing questions at her, accepting only one word answers.

It took only a moment to realize that this doctor was not interested in helping her in any way and so she ended the appointment after about fifteen minutes with him.

With a phoney benevolent smile, he stood to leave the room, saying: "I know a few people with FMS and it's a terrible condition to have. I hope you can find help with it." Sarah said: "But you're not going to help me, right?" Dr. B. shook his head and shrugged his shoulders. Sarah asked him if he could at least recommend another doctor in his practice or otherwise who would suit what she needed. Dr. B. said NO. Sarah asked if he could suggest someone who would at least be willing to listen to her. Dr. B. said NO. Sarah had to physically put herself between Dr. B. and the door to keep him from walking out. She then informed him tearfully of that seven thousand FMS patients commit suicide every year and that she had tried herself this year. She told him that she was in desperate physical trouble and she needed help. He said that he was sorry with his tight-lipped smile, a practiced sympathy, and started to leave.

"One last thing," Sarah said. "Im glad you're having such success, but I don't know how you expect to be a good doctor if you won't even listen to your patients." With that, she left his office, still speechless and astonished with his callous dismissal and his fiscally-designed 45 minute requirements.