HEALTH ‘CARE’ OR TORTURE; ONE WOMAN’S EXPERIENCE WITH ABUNDANT INSURANCE IN A TEACHING HOSPITAL
By Daria M. Brezinski
In light of the health care conversation, it seemed the appropriate time to speak to the mothers caring for sick children, the sons caring for elderly mothers, the individuals contemplating end of life care and those that are already there. This is the story of my dearest friend Marie, about teaching hospitals (that train medical professionals), how the institutions have lost the way from maintaining health and ‘caring’ to treating patients as guinea pigs, numbers, income generating constituents using fear tactics. Almost 95% of the below was paid by Marie’s health insurance or Medicare. Marie’s story could have been an anecdote in Maggie Mahar’s book Money Driven Medicine. Is there any hope of regenerating and resuscitating the ‘care’ and humane back into medical establishment?
BACKGROUND
Marie was born on Long Island, New York where she lived through adulthood. After 33 years as a lower elementary school teacher, she comfortably retired to a life filled with other retirees. She and Bill, her husband, had common and diverse interests but no children or immediate family. In 2000, Bill found employment in Virginia and the two decided to retire there.
By 2003, Marie consumed high levels of sugar in her diet. Like many individuals, she assumed that substituting healthy foods from the health food store ensured her of a healthy diet. However, instead of soda, Marie drank highly concentrated fruit juices with 26 grams of sugar to a six-ounce glass (often drinking the entire quart in a sitting). Her diet was full of carbohydrates and sugars- high sugar jellies and bread, pastas, sweets of all kinds, ice creams, etc. This ‘high sugar diet’, in addition to lack of exercise, no water and television/computer viewing, led to an inability to sleep (my observation). She first sought alternative therapies for her insomnia- herbs, vitamins, chiropractors, alternative physicians, etc (NO one ever looked at her consumption of sugar or her hormone imbalance as a possible cause).
SLEEP APNEA ?
This brought Marie to a Teaching Hospital’s Sleep Disorder Clinic in 2003 (because a friend had received in-home oxygen for his apnea which sounded like a great solution to Marie). During intake, her blood pressure and sugar were skyrocketing at which point she was admitted to the Emergency Room adding her to the multitudes of ‘rescue care’. After multiple studies conducted by various medical departments, she was told she had kidney disease and immediately began to have dialysis treatments. Marie never really understood the ramifications of dialysis or transplant and the number of medications she would be taking or the procedures afterward. Since ‘pay for care’ has become pay for doing, surgery, testing and procedures, Marie, amply covered with insurance, was frightened into believing that these were the only alternatives. In fact, the physicians informed her that it was her herbs and vitamins that created her renal failure (her diet and lifestyle were never in question).
MEDICAL DIAGNOSIS
Marie did not receive a second opinion for this life-altering event. She accepted the word of the physicians because they are the ‘gods’ of medicine whom she never questioned. Her journey at the TH’s Medical Center began in earnest as she went to dialysis three times a week (traveling 40 miles from her home) for three-four hour treatments (exhausting in itself). Her kidney transplant finally occurred on January 15, 2006 (three years later) accompanied by approximately 45 pills a day taken in a timely fashion (Had anyone taken the time to know her, they would have discovered that Marie was always late for everything). By this time, she was emotionally, physically, spiritually and mentally exhausted from her ordeal.
PROCEDURES
Immediately after returning home from a six-week vacation in the August 2007, Marie’s health began to deteriorate. Bill found her on the floor in the bathroom several times because she did not have the energy to return to bed. Her eating and drinking was sporadic as well as her medication regime. Mental clarity began to diminish to the point where she was unaware of her surroundings or provided illogical and inappropriate answers to questions. Bill took her to the TH’s emergency room on August 4, 2007. After nine hours, she was sent home, finding nothing overtly wrong.
After a week of continued declining health, her eyes became vacant, she slept all day and night, and she was unaware of her surroundings and began to hallucinate. Bill then took her to the local non-teaching hospital’s emergency room where she was immediately rushed to the TH (as the non-teaching does not have a renal transplant unit due to the ‘war’ between competing hospitals for patients). Marie was placed on the cardiac floor because she suffered from an erratic heartbeat (from taking her meds improperly, but no one asked). The nurses were advised that Marie is usually a warm, congenial person and likes to sleep with the covers removed from her feet. Bill was informed that hospital rules state that feet must be covered. During the night, in her confusion, Marie turned 180 degrees in the bed because she was too hot (from foot covering). When the attending resident attempted to turn her around again, she bit him. She was then restrained, sedated and sent to ICU. (Because her behavior had been unmanageable at home, Bill removed the Welbutron, a psychotropic drug for depression, from the mix. Upon entering the hospital, the prescription was still active. The nurses had administered the drug to her in the hospital just prior to her biting incident).
Marie spent three weeks in the hospital, most of it in ICU unresponsive because she was over medicated on Morphine administered for ease with the ventilator (which knocked out her front tooth), leaving her unresponsive. Tests after invasive tests did not reveal the reason for her condition- spinal taps, kidney biopsy, etc. Approximately 12 machines disseminated various drugs and fluids to her body as well as monitoring vital signs. Dialysis was administered twice although her kidney was not in failure. There was no conclusive diagnosis for her decline in health. Each morning, I attended rounds to determine her condition because there were so many teams all day long; a renal team, psychiatric team, internal medicine team, patient coordinator team, cardiac team and general practitioner all consisting of three to five physicians. I requested that the morphine drip be substituted for something that allowed her to wake up. Slowly, she came back to the present. It was thought that Marie MIGHT have overdosed on her medications. Because of this, she was sent home, against my wishes, under the restriction that I would oversee her medication, food, fluid and exercise schedule.
The day after she returned home, her body was three times the size of normal from the saline solutions. She had difficulty breathing as the fluid entered her lungs and she was returned to the ER the next day. Lasix was administered in the ER and she returned home to recuperate the same day. She was suffering from bruises, body trauma, emotional depression and spiritual depletion and cried all the time.
By this time, Marie had no veins that could withstand any more needles although she had to have blood drawn daily by the at home nurse. She was black and blue from head to toe. She cried each time the nurse came to the house to draw blood because not only was there no blood to be had but she had difficulty finding a vein to puncture. Marie said she felt like a pincushion or a target. The at-home nurses were many- occupational, physical therapy, general nurse and social worker all paid by Medicare and most unnecessary because they did nothing but talk to her which her friends could have achieved for nothing. Marie had 24 hour care at home (thanks to her savings account). As her health improved, she went on shopping excursions, luncheons and began to resume her normal activities. Her mental status returned to within ‘normal’ ranges.
Within two weeks, several post hospital visits were scheduled including tests for bowls, MRI’s and CT scans. During each visit, I gained information; insight and understanding regarding the complexities of kidney transplant recipients that Marie failed to grasp. The first visit, to Marie’s psychiatrist, was overwhelmingly informative. Upon arrival, Marie was placed in a room with a resident. Peculiarly, neither my appearance nor Bill’s was restricted or questioned. Marie was asked how she felt and then, to my surprise, asked what medications she would like to be prescribed. This conversation lasted less than five minutes. Marie went into the hall at which point the resident realized that she was a Medicare patient, called forth one of the psychiatrists who met Marie in the hall and asked her how she was doing. With no appropriate care of a patient who had just been on the brink of death, by the attending psychiatrist, I was alarmed and immediately took action.
Returning to Marie’s residence, I rummaged through years of files to find that the psychiatric office had spent several years medicating Marie 2003-2007 (on her own admission of depression for her condition in 2003) WITHOUT appropriate testing, diagnosis, follow up or therapy. Medicare had been billed for the 15-minute (which rarely lasted that long) sessions where the psychiatrist had not been in attendance nor given her diagnostic analysis for her illness at each visit. Over the years, Marie had been prescribed a cocktail of psychotropic drugs for sleep, depression and more depression, sometimes four at a time. (The cocktail of drugs she took added to her sleeplessness, constipation, mental confusion, etc) Research reveals that individuals over the age of 60 taking psychotropic drugs can develop permanent physiological and/or neurological damage. Upon the conclusion of my investigation questioning the physician, Marie immediately stopped taking the drugs with the exception of the Trazadone, a sleep aid.
DECLINE AGAIN
After nearly two weeks at home, Marie again began to show signs of decline in health- diarrhea, disorientation, roller coaster emotions, unable to hold bladder, but the REAL indicator was the intense pain she felt in her right backside. Because it was so intense, a heating pad was used to ease the pain (as prescribed by physicians over the phone). Sitting in the bathtub was Marie’s only relief. (for hours at a time). A rash became visible and it was assumed that the heating pad was the culprit. Marie met with her Primary Care Physician and her kidney transplant physician, and both saw no apparent reason for the pain (thinking it psychosomatic) and sent her home with Tylenol (only 8 tablets a day were administered). Her pain was unbearable.
After a week of tears and crying, on a Friday in October, she was taken back to the kidney transplant clinic where a resident in the clinic, saw the now spreading rash on her neck and chest. He took blood for analysis and sent her home. By Monday, Marie could stand the pain no more and she was taken over the mountain to another non-teaching institution, (where she receives her Aranesp shots because the medical professionals there at least have an in-depth conversations and listen to her) found to be extremely dehydrated with a questionable rash all over her body. She was rushed by ambulance to the TH (the non-teaching has no facility for kidney transplant patients) where she was placed in isolation for 15 days with highly contagious Herpes (shingles) and C.Diff (having exposed a multitude of care givers for two weeks). During that time, various transplant teams, psychiatric teams, cardiac teams, infectious disease teams, general practitioners and internal medicine teams saw her at the TH on a daily basis. There seemed to be a pancreatic problem, billyrubin problem and the transplant team (not her regular physician who was no where to be found) was pressuring for the removal of the gall bladder, which, they conveyed, is done on a routine basis for elderly individuals (with Medicare)! Marie rejected the offer because the internal medicine and infectious disease physicians informed Marie that the pain in her liver/gallbladder and stomach areas as well as the other symptoms, were the direct result of the Herpes virus and C.Diff. A battle ensued between internal medicine, kidney and cardiac teams with Marie caught up in the middle completely confused and afraid. I cried every night.
During her two weeks at home, Marie ate minimal amounts of food and by the last week, kept to a liquid diet. Thinking her constipated, her GP prescribed Go-Lightly and rounds of Colace in order to prepare her for a colonoscopy to determine the reason for her constipation (NOT thinking it might be the cocktail of medications). Between her home stay and the hospital, Marie was on a liquid diet for over THREE weeks (having had THREE prescribed Go-Lightly treatments because the TEAMS of physicians were not communicating with each other). She had a lower GI done but for some reason, the upper kept being postponed (even as she was wheeled into the prep room). With all of this, Marie was administered IV fluids and her weight rose to 191 pounds by the time she returned home (her normal is approximately 140). She was prescribed Flagyl and Valacylovir and sent home. While on these drugs, she continued to improve; her mental and emotional status was within ‘normal’ range. Within two days of ending the medications, the symptoms returned- bowel and bladder problems, mental confusion, in and out of reality, emotional roller coaster. This time, the emotional and mental issues became extreme.
COERSION TACTICS
After a visit with kidney transplant clinic, she was admitted to the hospital in December with a return of the C. Diff and Herpes as well as an extremely elevated billyrubin. At this time, her kidney functions still remained within normal range as well as her other vital signs. Over a five-day period, the kidney transplant team, the Gastro Intestinal team, the Infectious Disease team had differences of opinions about Marie’s condition. A political power struggle ensued again with Marie in the middle. The kidney team wanted to first remove her gall bladder and reconciled with a procedure of ERCP. However, both the internal medicine and infectious disease groups disagreed and told Marie her pain and medical issues were the residual effects of her Herpes. Marie refused any invasive procedures. She was emotionally, physically, mentally and spiritually exhausted. Bill wanted to leave the hospital because he agreed with the two teams. But the head of kidney transplant told Marie that she was free to leave the hospital, but if she did, she would leave without medical approval (even though she had three other consultations by medical physicians within the hospital that disagreed) and threatened that her Medicare insurance would not cover her two-week visit. Sounding like a threat and coercion, Bill became furious. The Patient Bill of Rights was removed from the hallway and presented to the doctor and his six residents.
Throughout the night, when no one was in the room, Marie was visited by the attending resident who continued to try and coerce her to do as the kidney team requested by waking her at 2, 3, 4 AM with medical forms for her signature. Marie called me each time he left the room to ask what to do. Bill and I tried to get the psychiatric team to deem her incompetent to sign such forms to no avail and from that point forward, one of us stayed with her during the night. Throughout this fiasco, someone convinced her that having this procedure would deflate her abdomen (something the resident told her to get her to sign?) and lessen her waist measurement (all of which are the byproducts of taking the kidney medications). For the first time since she was admitted, her regular kidney specialist, came into the room to prepare Marie for what he thought was her procedure to remove her gallbladder. He observed her confused mental status and sent Marie home to observe her over the next week or so, stating that she was confused, not thinking clearly and unable to make such a decision herself. This was the Thursday, a week before Christmas 2007. It has now been four months of massive doctors opinions, doses of drugs, in and out of the hospital. All the time she was home, Marie kept saying she was ready to please let her die.
SUMMARY
After attending several Christmas parties Friday, Saturday and Sunday, which lifted her spirits immensely, Marie took a turn for the worse on Monday. The in-home nurse arrived could not find any veins to puncture, told her that if she did not go to the hospital that I, as her legal guardian, would be arrested and imprisoned for negligence. Marie begged us NOT to take her to the TH, the confusion, the chaos, the inhumane treatment; we agreed and wanted a second opinion anyway. It was then we decided to go 60 miles away to another non-teaching hospital with a kidney unit. It was there where Marie found a peaceful setting without teams of six, seven and eight physicians waking her up and confusing her all day and night. She slept well and looked serene for the first time in five months. The kidney specialist at the non-teaching hospital was sent her enormous amount of records (hand delivered by Bill both paper and disc). In his analysis, the kidney specialist made a troubling discovery- Marie’s old kidney had stones. He alluded to the fact that Marie could have FIRST benefited from a change in diet, exercise and the removal of stones rather than kidney dialysis and a transplant. Imagine our horror! (We did not tell Marie).
Within a week, Marie’s health declined and she died there two days after Christmas never regaining consciousness. Her body, mind, spirit and emotions couldn’t take the abuse any longer. There was no energy to fight. She gave in finally at peace.
After Marie’s death, the bills began to come. There was a 45-page bill from her August visit from the TH. Listed were procedures and tests that WERE NEVER conducted. As a kidney biopsy is an invasive procedure and neither Bill nor I ever signed for these tests to be administered to Marie, we noticed the discrepancies immediately. In order to verify our skepticism, I called the kidney clinic and asked what the results of these biopsies contained on the dates described in the bill. There were no tests, explained the nurse. When confronted, she said it was the billing departments fault, not theirs. After this, Bill and I began to sift through former bills and determined that there were many, many questionable items listed from as far back as 2003, which HE, the Insurance Company and MEDICARE dutifully paid.
CONCLUSION
Was Marie a guinea pig for medical students who needed to practice transplants and surgery? The inhumane treatment of my friend, her husband and myself throughout this ordeal cannot be dismissed. The enormous amount of waste and incompetence with just one patient enduring end-of-life care through taxpayer dollars is alarming, deplorable, unethical and the very reason why healthcare costs are skyrocketing. The emotional, spiritual, mental side of illness is never under scrutiny. What patients, their families and friends (if they are lucky enough to have them around) must endure with the medical establishment is insane, ludicrous downright torture. Marie was one of the lucky ones (if you could call her above ordeal lucky). She had her husband and myself fighting for her rights, on her behalf, for justice and integrity of the system, questioning every procedure and drug. She had accumulated enough money to pay her bills leaving ‘just enough’ for her husband to live. Even with adequate insurance and a Living Will, she suffered at the hands of the incompetent, corrupt, inhumane health care system. How can true ‘care’ be given in the production line, profit motivated system where insurance companies and hospital CEO’s are in the room with patients and doctors? Marie would have been more comfortable dying at home, on her own terms than the hundreds of thousands of dollars spent for five months of torture! It’s time for individuals to make their own choices at end of life instead of being frightened with imprisonment for allowing friends and family to die with dignity instead of torture. IT’S TIME TO STOP!