GENERAL WARNING: Some of the information is by necessity graphic in nature. However, abuse and/or neglect of patients must be addressed whenever and where ever it exists for the benefit of all concerned.
MD WARNING: You will not like many of the things that you will read in this essay, but they are all true and related with the sincere hope that by making the information public it will result in improvement of your profession and patient care. This is not a blanket indictment of the medical profession -- I have known many outstanding MD's in my lifetime that I thoroughly respect.
Background: This is a true story. There will be no hospital, MD, or staff member specifically identified for a variety of reasons. The story will be told from the perspective of four family member witnesses to the events. I am "P", a licensed DVM (Veterinarian) in private practice for more than 20 years and a senior Officer in the US Army with combined active duty and reserve service of more than 25 years. Unless otherwise marked, all observations and opinions in the text are my own, and I am solely responsible for those observations and opinions. This is a work in progress, and I will update it as other family members send information for inclusion. "V" is an RN with both hospital and clinic experience, currently serving as the State Public Health Nurse in the county of residence. "L" is an ordained Southern Baptist minister with more than 40 years service as the pastor of churches in several states, and untold hours spent ministering at hospital bedsides. "J" is a professional educator with a Masters Degree in Education and more than 40 years of teaching experience. Dad was retired military with service in both WWII and the Korean Conflict.
After many months of repeated requests, I finally received part of Dad's records on 15 Mar 03. My narrative was completed prior to receiving the medical records, and I was amazed at how well the lab reports validated my clinical assessments. I suspect that this is one reason why it was so difficult for me to obtain the records. Those items directly quoted from the medical records are presented underlined.
|Wednesday -- 11 October 2000|
Dad was a 77 year old (10/31/22) WM, 6' 185#, and basically active and healthy at the time of presentation. He was living by himself, required no assistance with his daily life, and drove himself to the clinic for his appointment. Dad told me later that his chief complaints were anorexia X 3 days, constipation X 7 days, and severe abdominal pain. He went to the clinic 11 October "with two-month complaint history of constipation, changes in stool caliber over the past two weeks" with "abdominal cramps, and diffuse abdominal pain". The physical exam notes state: "The patient is awake, alert, and oriented times three. Heart: regular rate and rhythm. Lungs: clear to auscultation bilaterally. Abdomen: soft and depressible. Nontender, non-distended. Bowel sounds are present. Extremities: full range of motion. Strength is 5/5. Normal sensation throughout." On examination, the MD at the clinic found "a fungating mass at the anal verge" and transferred him to the hospital.
The hospital emergency room record lists: "Assessment/Diagnosis: 1) Rectal Mass, 2) Partial SBO. Abdominal cramps become severe at night, feels bloated, + nausea. Bleeding rectal mass." He was admitted to the ward, and a nasogastric tube with suction was put in place.
|Thursday -- 12 October 2000
NPO with a nasogastric tube. A colonoscopy examination was done, and the Colonoscopy Procedure Report states: "50mg Demerol IV and 2.5mg Versed IV before the procedure". A biopsy was taken of the tumor, which was diagnosed as "adenocarcinoma with mucinous features".
From the medications list: "Lactated Ringers IV Soln" is the only item for this date.
|Friday -- 13 October 2000|
I received a call that my Dad was in the hospital with a diagnosis of cancer. He had been in the hospital for two days before I was notified. I called my siblings to notify them of the situation. I asked L, who lived less than two hours away from Dad, to go to the hospital and check on things while V and I made travel arrangements.
From the radiologist's report: "There is an NG tube, which extends into the stomach. The tip is off the film. There is a bibasilar atelectasis. No pleural effusions. There are multiple loops of gaseous distended bowel. There is also gaseous distention of colon. There is also air down into the rectum. Findings would be consistent with an adynamic ileus."
From the medications list: "Lactated Ringers IV Soln" is the only item for this date.
|Saturday -- 14 October 2000|
I arrived at the hospital on 14 October. I went to the Ward/Room where Dad was supposed to be, but found that he had been moved to ICU earlier that day due to an episode of 160 BPM tachycardia.
I was surprised when I first saw Dad in the ICU bed. He looked like a term pregnant woman -- his abdomen was distended and taut. The grimace on his face immediately told me that he was in pain, although he was trying very hard to "be brave". He was understandably upset by his diagnosis. Dad complained to me of severe abdominal pain and difficulty with inspiration. He still had the nasogastric tube with suction, and was ordered NPO. I checked his IV stand and found electrolyte fluids and Pepcid.
My plan on arrival was to be there for Dad as his daughter, and to be a positive adjunct to his treatment. I asked to speak with his MD, and got to talk with the intern assigned to his case. I was told that the diagnosis was colorectal adenocarcinoma. They had done a variety of tests but had not been able to identify the margins of the lesion, so more tests were planned. Their plan was to hold Dad NPO and with nasogastric suction until the tests were completed to allow for complete emptying of the bowel and the best visualization of the lumen of the colorectum.
V: "Nursing 101 -- Be an advocate for your patients. When patients are hospitalized, they lose many of the rights and dignities that we all enjoy. They eat what and when they are told, must ask for help dressing and using the bathroom, are awakened at all hours, are subjected to intrusive and often painful medical tests, and are partially or totally undressed on a regular basis by people they barely know. It is the nurse's job to teach the patient about his care, provide comfort, and intervene on the patient's behalf when necessary. I know that medical professionals are overworked, underpaid, and stressed out. But when one of my patients asks me to do something, I try very hard to get it done. If it is un-doable for some reason, I explain the reason, and if possible, offer alternatives."
From the radiologist's report: "There has been a progression in the right basilar atelectasis. Persistent mild left basilar atelectasis. NG tube projects into the stomach. There continues to be a large amount of air throughout both large and small bowel. Air does extend into the rectum. Persistent adynamic ileus." Single-contrast barium study: "Immediately past the balloon is a high-grade area of stenosis, which is only captured on the spot films. When overheads were obtained, the contrast in this region had evacuated. Attempts to refill it were unsuccessful due to the high pressure; Gastrografin would not flow in. No other areas of stricture were identified. However, there is a large amount of retained fecal material throughout the colon. There is a reflux of Gastrografin into the terminal ileum."
The tachycardia that caused Dad to be moved into the ICU was supraventricular and self-resolving --- no precipitating cause had been identified. I explained to the intern that both V and I had personal medical history experience with paroxysmal supraventricular tachycardia, so we were familiar with the syndrome as a family. I asked about Dad's obvious bowel obstruction, about pain medication, and about nutritional support. The intern had few answers, but he said that he would check with the MD in charge of the case and get back with me.
From the lab report: "Glucose . . . 118".
From the medications list: "Sodium Chloride 0.45% & 0.9% IV Soln, potassium chloride, Fleet prep, sodium phosphate, heparin" are the only items for this date.
At the shift change at 10PM I left for the night. I had not received answers and Dad had not been given any pain medication to that point -- and "red flags" of doubt were going up in my mind. On the way home, I stopped and bought a large desk calendar so that I could keep notes and document the things I was seeing and hearing during Dad's hospital stay.
|Sunday -- 15 October 2000|
When I arrived at the hospital early Sunday morning, Dad was still being held NPO, with only a saline drip IV.
From the lab report: "Glucose . . . 117".
Dad was in obvious pain and asked me to try again to get him something. Dad stated that he had not been able to sleep because of severe pain and that they had not given him anything for pain overnight. I had no intention of things degenerating into an adversarial situation, but as the day wore on with no response to repeated requests to the nursing staff for pain medication to ease Dad's discomfort, no nutrition provided, and no good answers as to why, I felt like I was left with few choices.
I spoke to the intern again, and told him that I am a Veterinarian. I explained that since my patients can not talk to me I have had to learn to be more perceptive of body language and other signs of physical condition and discomfort. I described the many signs that Dad displayed which suggested severe pain -- the grimace on the face, the groaning, the frequent changing position to try to get comfortable. Then there was the fact that Dad was ASKING for pain relief.
I also questioned the medical logic of holding a geriatric patient with a cancer diagnosis and a planned extensive surgical procedure for days without nutritional support. The intern said that he would discuss the issues with the MD in charge of the case and get back with me. I requested TPN, or Dextrose as a minimum, be provided to feed my Dad. I was informed by the MD that Dad had plenty of muscle that he could catabolize, and that it was not unusual for patients in this facility to be denied nutrition for 7 days or more.
V: "When Dad was first admitted to the ICU, everything by mouth was put on hold, including water and pain meds. However, when day one stretched into day two, day three ... and Dad begged for pain medicine (quietly, of course, 'cause that was Dad), and we asked the nurse to call the doctor ... the request seemed to get lost between the nurse and the doctor (some advocate!). Also during Dad's stay in the ICU, it seemed to me that, with a few notable exceptions, the nurses avoided coming into the room when family was present. And someone was usually present. ICU patients should be checked on frequently. ICU stands for INTENSIVE CARE unit."
From the radiologist's report: "There is an NG tube, which is coiled within the stomach. There is a bibasilar atelectasis. There is persistent gaseous distention of both large and small bowel. There is a persistent large amount of contrast within the bowel. Retained Gastrografin and gaseous distention of bowel from known rectal mass."
Throughout the day, I spoke to every nurse and every member of the physician staff available to me requesting pain medication, and none was provided. By late evening, Dad's nurse ordered me to stay in Dad's room and leave the staff alone. By the 10PM shift change break in visiting hours, Dad was in severe pain, writhing in his bed and groaning, but there had been absolutely no pain medications administered all day despite my repeated requests on his behalf. I am not a whiner or complainer, but the situation had become intolerable.
I went to the hospital security desk and filed a complaint against my Dad's MDs and nurses for inhumane care in refusing my Dad - a 77 year old man with cancer - nutrition and pain medication for what was now FIVE days! Although they did hear my complaint, I was told that I needed to file a written complaint with the Patient Advocate office when it opened in the morning.
I waited through the two hour break, and went back to Dad's room at midnight to let him know that I had been to the security desk on his behalf. I have a loud voice anyway, and Dad was very hard of hearing, so I am sure that the hospital staff overheard.
As I was leaving the ICU for the night the intern caught me in the hall and told me that he had had the authority to give Dad pain medication all along, but had held off because "they needed to see how bad the pain would get". I told him that I did not consider that acceptable patient care, or even a very good answer. I told the intern that if my Dad must bear his pain without medication, then the MDs must personally tell my Dad exactly why it was necessary so that Dad could give his informed consent for this painful medical procedure/treatment. The intern promised me only that Dad would get something for pain prior to his colonoscopy the next morning.
From the medications list: "Sodium Chloride IV Soln, potassium chloride, sodium phosphate" are the only items for this date.
|Monday -- 16 October 2000|
I arrived first thing in the morning to check on Dad -- then I went directly to the Patient Advocate's office as soon as they were open to file my complaint. They took my written complaint and assured me that they would look into it. Then I went to the Social Work Services office and made the same complaints.
I had a chance to talk face-to-face with the MD in charge of Dad's case. I asked why my Dad was being left for days without medical or surgical intervention when he was obviously obstructed and in pain. The MD said that I was wrong in my assessment -- that Dad's cancer had rendered him functionally incontinent. I disagreed, pointing out the distended abdomen. He told me that since I was only a Veterinarian, I did not understand what I was seeing, and I would not understand their medical and treatment decisions. I asked why Dad had received no nutrition at all for days. The MD answered that they were watching his blood glucose, and everything was normal.
From the lab report: "Glucose . . . 104".
I asked the MD how he expected their iatrogenic catabolism to impact on a patient with cancer and therefore already prone to cacexia. I had hoped that my obvious knowledge and use of the proper medical terminology would stave off their standard retort to my questions; but there it was, the same answer again -- I was "just a Vet" and I "couldn't possibly understand".
The things that the MD was saying seemed contrary to what I had been taught in my general medicine and comparative physiology courses. It was time for me to go to the hospital library and find answers for myself. I found the hospital library, presented my credentials, and was granted permission to use the professional library resources during my stay. In researching my questions, I found several texts and references that documented a geriatric patient's absolute need for body condition assessment and nutritional support. One text stated that overlooking a geriatric patient's nutritional needs increased the complication rate and associated morbidity/mortality of invasive treatments. I made a copy of the pertinent section of the text and gave it to Dad's MD -- he was not impressed.
The nurse from the wound clinic came to mark the site for Dad's colostomy stoma, and asked if Dad usually wore his belt over or below his portly belly. I assured her that Dad's stomach was usually very flat, but was distended due only to a bowel obstruction.
From the radiologist's report: "There is increased density at the bases bilaterally consistent with infiltrates and/or atelectasis. NG tube remains in place. Increasing bibasilar infiltrate and/or atelectasis since 14 October 2000. The examination of the abdomen shows contrast within loops of bowel. The contrast appears to largely lie within distended loops of small bowel. These findings are concerning for obstruction as there is very little air actually identified within the colon. Findings suggestive of obstruction. Recommend clinical correlation."
In order to get his mind off his hunger and his pain, Dad began intently focusing on the drops as they fell in the IV reservoir -- putting himself into a semihypnotic state. I do not know if it was intentional or unintentional, but it did seem to help him a bit. I noticed through the evening Dad was having some difficulty breathing -- shallow and a bit labored due to the abdominal pressure against his diaphragm -- and called it to the attention of the nursing staff.
|Tuesday -- 17 October 2000|
Dad was scheduled for surgery today, but the surgery preceding him ran very long and Dad's surgery was postponed.
The Chief of Surgery came to talk to me. I posed the same questions that I had been asking since my arrival at the hospital three days ago -- why was my Dad being left for days without medical or surgical intervention when he was obviously obstructed and in pain, what was the medical logic of holding a geriatric patient with a cancer diagnosis and a planned extensive surgical procedure for days without nutritional support, and why had my Dad been denied pain medications.
I said that I was very concerned about necrosis and/or leakage of the obstructed bowel -- since no cause of the obstruction had been explored or identified -- and the potential for peritonitis. He insisted that Dad was not obstructed, but functionally incontinent due to the tumor. He also stated that the human bowel does not perforate or necrose as happens in other species due to prolonged obstruction and distention. This did not seem medically correct to me.
I went to the nutrition department at the hospital to talk with the nutritionist about Dad being starved for so many days. When I arrived, they were starting a class on the importance of proper patient nutrition for the staff, complete with fresh pie slices for the attendees, and I was invited to join in. Afterwards, I asked why this material was not presented to the MD staff, and discussed my Dad's now 7 day NPO/no nutrition provided status despite my frequent protestations to the MD's. The nutritionist was surprised and concerned, and said that they would check into my Dad's case.
From the lab report: "Glucose . . . 93".
Dad's breathing was getting worse, and he was coughing occasionally.
From the radiologist's report: "There continues to be density at the left base consistent with infiltrate and/or atelectasis. An NG tube remains placed through to the stomach."
It became more and more difficult through the day to get Dad's attention as he was consumed by watching the IV drips to relieve his pain and hunger. By afternoon, Dad seemed to be breaking with reality -- he thought that he had already had the surgery, and kept asking if they "got it all".
I spoke with Dad's MD again. I reported Dad's respiratory problems, and asked about Dad's abnormal mentation. The MD said that everything I was seeing was common in patients in ICU because of disturbance of the wake/sleep cycle from ICU 24 hour activity.
Due only to my insistence, and in an effort to shut me up, they finally hung one single token liter of 5% dextrose in saline during the evening shift, but removed it after only 500ml was actually infused -- the first calories that Dad had received since he went to the clinic 11 October AM!
|Wednesday -- 18 October 2000|
Dad was the first in for surgery. He signed an informed consent for "Laparoscopic assisted diverting colostomy, endorectal ultrasound, tunneled central access catheter placement" -- note that no mention of bowel obstruction appears on this record.
From the radiologist's report: "Comparison from previous examination from 17 October 2000 shows poor inspiratory volumes, which causes crowding of markings. The hemidiaphragms are slightly hazy, which suggest there may be an element of infiltrate and/or atelectasis. The lungs demonstrate increased interstitial lung markings."
My complaint to the Patient Advocate's Office was effective, and forced a response from both the Ward Head Nurse and from the Chief of Surgery. I explained to all that my goal was to seek appropriate and humane care for my Dad, nothing more. The nutritionist stopped by to let us know that she had talked with Dad's MD, and that Dad would be started on IV-TPN (intravenous nutrition solution) in the recovery room immediately after surgery. Dad's MD/surgeon also promised that Dad would come out of surgery with a central line placed and TPN feeding, along with nasogastric tube feeding immediately post-surgery.
Although reviewing Dad's medical records shows that the radiology reports consistently confirmed what I was reporting to the MD's as my clinical assessment, this information was never disclosed to us at the time. We waited in the family waiting room outside of the surgery unit while Dad was in surgery.
The Chief of Surgery came to see us after the surgery, and told us that they had not been able to remove the tumor due to the location and internal adhesions. Oh by the way, he said, they had found a surprise when they opened Dad -- he had a Mekel's diverticulum and a secondary small bowel obstruction. I looked him in the eyes and said "Imagine that!" -- but there was no acknowledgment. The MD presented the obstruction to us as "new information" with no hint or suggestion in his words or demeanor that he and I had personally, face to face, argued over this very issue the day before. It had to be corrected with a resection of the obstruction site and a small bowel anastomosis.
I assumed the surgeons were surprised when loops of Dad's distended bowel under pressure burst through their linea alba incision line and confirmed what I had been telling them and they had been denying for days. I have since found out from the medical records that the surgeons "began to prepare for laparoscopy by entering the abdomen using a Veress needle technique and a 5mm infraumbilical incision. On entry of the abdomen air was noted to come from the Veress needle with a feculent smell. We realized that we had placed the Veress needle into the bowel. We then did a midline incision to open the patient and explore the bowel. We found a pinhole, which was over sewn easily with silk suture. There was reactive fluid in the abdomen. Cultures were sent." The Operation Report retrospectively listed "Indication for Surgery: Bowel obstruction" and "Preoperative Diagnoses: Obstructive rectal cancer" in complete contravention of the medical position that the MD's had argued in the preceding days.
These are the actual intraoperative photographs, from the medical record, of Dad's distended obstructed small bowel at the time of surgery:
How painful must this inflamed and distended bowel have been with pain medication denied, despite the patient's repeated requests, for the 7 preoperative days?
Oddly, even though the tumor had rendered Dad "functionally incontinent", they also had to create a mucus fistula for mucus forming in the terminal bowel below the site of the colostomy to exit the body -- for some reason the mucus could not exit through the "functionally incontinent" rectum. They never even tried to explain why!
|Thursday -- 19 October 2000|
Through the afternoon and evening hours Dad's condition was changing. I noticed the color of the sputum in his endotrachial tube gradually change from white to yellow to greenish yellow, and I called this to the attention of all staff that entered his room. I told them that if this was my patient I would culture the sputum to get a jump on whatever was growing there. I was told repeatedly that what I was seeing was "perfectly normal" and no culture was necessary.
From the radiologist's report: "The exam shows a right sided subclavian catheter with the tip at the superior vena cava level. A Dobbhoff catheter is noted with the tip overlying the expected location of the distal eophagus. A nasogastric tube is noted within the stomach. There is cardiomegaly with an atheromatous aorta and hazyness over both lungs, which may represent bilateral effusions and/or superimposed pneumonic process. Followup is advised."
The monitor showed that his temperature was gradually rising. Dad was becoming less and less responsive, and by late evening he had a glassy stare. Everything that I had seen, coupled with my medical training and experience, told me that something was going very wrong with Dad. The MD and nursing staff insisted that everything was progressing normally. The fact that I am "only a Veterinarian" and therefore was "unable to understand" what I was seeing was becoming the standard answer to my questions -- and I had had about enough of it.
I noticed that the student and intern MD's were carrying an ICU textbook, so I went to the library and checked out a copy of this textbook for myself. I began to read and study it from cover to cover during the many hours I spent at my Dad's bedside. When the MD's saw me with this textbook, they were not pleased -- the head nurse on one night shift even tried to take it away from me and told me that I was not allowed to have a copy of the book.
|Friday -- 20 October 2000|
I was startled awake at about 6AM by a phone call telling me that Dad was "back in ICU" and was having life threatening heart problems. Dad's MD asked me to come to the hospital immediately. When I arrived, I saw an MD working on my Dad with the defibrillator paddles. I went straight to Dad's MD and asked what he meant by "back in ICU". Despite my observations and warnings about the deterioration of Dad's condition, I was told that Dad had been moved out of ICU and up to the ward at shift change as soon as I had left for the night. Sometime in the early morning hours he had developed atrial fibrillation with tachycardia, so they rushed him back to ICU.
As I watched, the MD that was working on Dad had to shock him several times with the defibrillator paddles. I was told later that Dad was shocked 30 times before his heart rate and rhythm stabilized sufficiently. I was angry with the MD in charge of Dad's case for allowing Dad to be moved to the ward after I had warned them all day that Dad's condition was deteriorating. I told him that I was aware that Dad could die due to his age and condition, and that I could and would deal with it if it happened, but that I did not want his death caused by medical neglect. A nurse that was listening to our discussion broke in and stunned me by asking if I wanted them to continue working on Dad or just let him die as a DNR. I answered that they had better do everything they could for Dad.
The MD that was actually working on Dad told me that he was determined to get him through it. I was pleased and thankful for his attitude, skill, and professionalism. I stopped by the store on the way home that night, got him a thank you card, and wrote him a note telling him how much I appreciated his diligent work and his medical skill that day.
The cardiologist said that the cause of the cardiac complications was septic shock, but Dad's MD and the surgeons disagreed -- it couldn't possibly be the infection that I suspected the day before.
From the radiologist's report: "The exam shows no significant interval change, when compared with prior exam, except for the replacement of the Dobbhoff catheter with the tip which now lies within the stomach body. Please also note the presence of a left subclavian catheter with the tip, which appears to point superiorly into the jugular vein level."
After Dad was stable, V and I went to the Chief of Surgery's office to talk to him. I recounted all the things that I had pointed out in the past several days that had been ignored, discounted, and overlooked leading to what I considered to be abuse and neglect of Dad. The Chief of Surgery did not see the problem. I said "With all due respect, the patients in my kennel get better care than the patients in your hospital" -- and I meant every word of it. He answered that patients sicker than my Dad walked out of his hospital every day, and that if I didn't like things I could sue him. I told him that I had no intention of filing suit -- my sole purpose was to get appropriate and humane care for my Dad while he was in this hospital, and move him to a better hospital as soon as possible.
|Saturday -- 21 October 2000|
Dad was heavily sedated with versed and fentenyl and on a respirator, so most of my time was spent by his bedside reading the medical textbooks I had checked out from the hospital library.
The culture results showed E. coli and Staph (thankfully not MRSA) in the tracheal culture; and E. coli and Pseudomonas in the peritoneal fluid culture -- confirming pneumonia and peritonitis. They started Dad on Meripenum.
Dad had several bright red patches on his chest from the repeated application of the defibrillator paddles, reminders of his cardiac struggle the day before. I was thankful that his heart rate and rhythm had stabilized successfully.
The MDs pretty much stayed away from Dad's room -- I guess they did their exams during the change of shift breaks while we had to be out of the room.
|Sunday -- 22 October 2000|
Dad's abdomen was enlarging with fluid through the day. He did not appear to be having any difficulty breathing, although he was on a respirator, but he was beginning to look like a large water balloon. I mentioned it to his nurse.
A number of "IV" incidents occurred during the days that Dad was sedated --- although I did not make note of the exact day each incident occurred. Dad's ICU "nurse" one evening was a student from a local nursing school. She came in to change the IV fluids. I watched as she tried to stick the stylette of the IV set into the IV bag through the hard protective cover cap over the infusion port. I asked if she would like me to show her how to change IV fluids, and she said yes because she had never done it before. I showed her how to remove the cover cap, insert the stylette, and partially fill the reservoir to keep air out of the IV line.
|Monday -- 23 October 2000|
I was startled awake by a phone call telling me that Dad had dehisced, and they needed my permission to go to surgery for repair -- which, of course, I gave without hesitation, and then immediately headed for the hospital.
Once there, I was told that they had rolled Dad on his side and his suture line had come completely undone. Later, I found out from a nurse that the night nurse had turned Dad, and she said fluid spewed from his incision "like a whale" -- either the nurse did not think this was significant enough to include in the patient notes or the MD had not made himself aware of it.
The MD from oncology stopped by to discuss plans for Dad's treatment. Although I was very interested in discussing Dad's treatment options with him, I thought it was only right to let him know that I had already made arrangements to transfer Dad to another hospital ASAP, so his chemo and radiation therapy would be done elsewhere. Once apprised of the impending transfer, the oncology MD declined any further discussion of Dad's case saying that the MD that would actually be treating Dad would discuss it with me.
|Tuesday -- 24 October 2000|
When I arrived one morning, a fluid drip falling from the IV bag onto the floor caught my attention, so I checked the IV bag. I found a hole in the side of the IV bag where the stylette from the IV tubing set had been pushed through the bag at insertion, with a steady efflux rate of about one drop every 5 seconds which had formed a large puddle of fluid on the floor. Because this situation created a break in sterility and the potential for IV contamination of my Dad, I called it to the attention of the nurse immediately.
V found out about an in-service class on the staging and treatment of colon adenocarcinoma offered to the professional staff at another hospital in town. We asked for and got permission to attend the presentation, so we spent most of the day in class.
|Wednesday -- 25 October 2000|
We found another IV problem one morning when V & I arrived. Instead of being in the middle of the room, the right side of Dad's bed had been pushed toward the wall leaving just a narrow walk on that side. We noticed that Dad's right arm was hanging off the side of the bed on the right side. As we went to the right side of the bed, we saw that Dad's arm from the elbow down looked like a "Pillsbury Dough Boy" arm. The IV catheter had come out of the vein, and a very large amount of fluid had extravasated under the injection pressure of the fluid pump. Dad's fingers were three times normal size, and his hand looked like an inflated latex glove "balloon". His fingers would not flex due to the fluid turgidity of his digits, and there were small serum breaks in the skin between the fingers. We called this to the attention of the nursing staff immediately.
V: "One day Dad's IV infiltrated - not an unusual occurrence, especially in the very old and the very young. But because the site was not checked regularly, by the time we discovered it, Dad's hand was so swollen with fluid that his hand was white and he could barely bend his fingers."
An episode occurred this date during the late evening when Dad was rolled to a 45 degree angle on his side in bed, with rolled blankets pushed under his back to maintain the position. I advised the nurses and MDs that Dad suffered from spinal arthritis for years. This improper positioning of Dad, with his spine twisted abnormally, provoked a severe physiologic pain response even though Dad was heavily sedated, resulting in a sustained respiratory rate above 140, an increased heart rate @ 130-150 bpm, and hypertension as evidence of pain - all of which resolved completely and immediately by simply repositioning to a comfortable supine position.
|Thursday -- 26 October 2000|
They decided that Dad was stable enough and breathing well enough that they could wean him off respirator assistance and pull his endotracheal tube. The staff from respiratory came to Dad's bedside to begin the preparations for extubation. I watched carefully as they adjusted, suctioned, and arranged. Everyone was in place and prepared, and the leader of the respiratory group directed another to pull the endotracheal tube "on three". I interjected myself by shouting "STOP" -- and received some pretty nasty looks for my interruption. As politely as possible I said "I don't know how you do it in HUMAN medicine, but in Veterinary medicine we deflate the endotracheal tube cuff before we extubate the patient". The leader reached for the inflation bulb to show me that it had been done, and then gasped to the group "Oh my God, hand me the scissors!". With the cuff now safely deflated, I stepped back and let them continue to do their job.
|Friday -- 27 October 2000|
V: "Dad's hands were very shaky and he could not easily hold a cup to his mouth, so we purchased a cup with an attached straw that was the perfect size for him. He was finally able to sip his beloved iced tea. When we saw his nurse, we asked him to please be sure that the cup was within reach and was not removed from the room. Later that day, we found the cup on a bedside table which had been pushed up against the wall out of reach. The next day it had disappeared from his room. These may seem like small, insignificant issues, but if you were thirsty, had one hand extremely swollen, one hand that shakes badly, and no one to help you, it would be VERY significant! If Dad had been checked on regularly, these things might not have happened."
Once weaned from his Fentanyl and Versed, and extubated, Dad began complaining about back pain. I requested that Dad be given appropriate arthritis pain medication, since he had been flat on his back for 16 days, and prior to being asked to sit, stand, bend, etc. I inquired of his MDs concerning contraindications and drug interactions, and found no prohibitions. Because no pain medication was forthcoming, we purchased a vibrator pad for Dad's bed/chair to help alleviate his pain, which provided some relief while in use.
|Saturday -- 28 October 2000|
They brought Dad a tray of food, but he didn't feel like eating when it arrived. The nurse told me to try my best to encourage Dad to eat, even if it was just one bite at a time. I finally got him to eat a little. The food stayed on his bed tray almost 2 hours before Dad was hungry again.
I called the nurse to see if the food could be reheated, but she said she was too busy and would come back later. After another hour, I called the nurse again, but she said they were short staffed and she did not have time to reheat the food. I asked if there was any place that I could heat Dad's food up myself. The nurse directed me to the nurses' lounge where there was a microwave. I reheated Dad's food and he ate quite a bit more.
Later, when I went back to the nurses' lounge to heat up Dad's coffee, I was told to get out because only nurses were allowed in the room. I explained that Dad's nurse had told me to come in here and heat Dad's food up myself, but they told me to get out and stay out. I went and got Dad a cold drink instead from a vending machine.
I repeated my request for arthritis/back pain medication to all nurses and MDs associated with Dad's case, again finally going to Social Services requesting them to intervene on Dad's behalf. I was finally able to get Dad's MD to agree to give him pain medication, and the MD ordered Tylenol on a 4-6 hour schedule.
|Sunday -- 29 October 2000|
I had to leave, and it was the hardest thing I have ever done -- to drive away and leave Dad unguarded and unprotected in that hospital even for the few days until he would be able to travel. I was afraid of what they might do to Dad to retaliate against me for questioning their methods and insisting on moving Dad to another hospital.
I delayed leaving as long as possible, waiting in the ward where Dad was to be moved to from ICU, and told one of the nurses on the ward about my anxiety and things I had overheard about my Dad's case from other nurses. She felt that I needed to talk with the MD in charge of Dad's case before I left, so she called him to come and talk with me in the staff conference/break room on the ward. He brought a histopathology report with him -- the one that he had been promising to give us for days -- that refuted part of the information that I had overheard about bowel necrosis at the obstruction site causing Dad's peritonitis.
|Tuesday -- 31 October 2000|
L called to say that he had taken Dad some cookies for his 78th birthday -- Dad was a Halloween baby. He said that when he got to Dad's room on the ward, he found that Dad was tied to his bed. He asked the nurse about this and was told that Dad kept trying to escape. The nurse told him that Dad had almost made it to the elevator one time. They had decided to tie Dad to his bed for his own safety. L said Dad was anxious and kept saying "get me out of here". L assured Dad that he would be transferred to another hospital as soon as he was able to travel.
|Friday/Saturday -- 3-4 November 2000|
The hospital had promised me that as soon as Dad was able to travel, he would be transported by medical flight to the new hospital that I had arranged. Despite this promise, Dad was loaded into an ambulance to make the 12+ hour (650 mile) trip strapped to a gurney. Once there, they took Dad into the emergency room and dropped him off with his plastic Halloween bucket of cookies.
From the admit note: "ADMITTED: 11/04/2000 11:23
Pt seen and examined with Drs. Xxxxx and Xxxxx and case discussed. I agree with their assessment. [Patient] is a 70 yr WM with no known prior medical problems. Recently diagnosed with anorectal cancer in [Dad's city]. The full details of his recent hospitalization are unavailable to us but we have gathered the following. He presented with a friable rectal mass last month. He had a 2 month h/o wt loss and change in stool caliber. The cancer was found to extend to the pelvic wall. He underwent a diverting colostomy as he developed intestinal obstruction. His post op course was complicated by peritonitis (pseudomonas and E coli) treated with meropenem and allowing the wound to heal by secondary intention. He had several runs of PSVT treated with DC cardioversion.
His hospitalization has left him weak, malnourished and likely some anoxic brain injury. His daughter had him transferred here for further care since she lives here in [city]. The plan is for rehab and combined modality therapy of his cancer.
IMPRESSION: we need to get more information about his hospital course. Currently appears stable. Our guess is he will require chemo/XRT and possibly pelvic extenteration. He will also need aggressive rehab and nutritional support. We will do a screening head CT to rule out brain mets or a cerebrovascular event to explain his decline in mental status. Dementia v delirium: Per report by outside hosp pt altered p surgery "extensive workup negative" but records not available. Question if pt underwent code/suffered anoxic brain injury, will attempt to obtain records."
The thing that bothers me the most is that this occurred in a TEACHING hospital. Each MD was followed by half a dozen or more students -- learning to be just as inhumane and patronizing as their teachers. This only perpetuates what appears to me to be an institutionalized problem of treating the disease but neglecting the patient. Despite frequent questions, and the medical knowledge that goes with my DVM and 20 years of practice experience, I found it very difficult to get complete and nonconflicting information. At times I was left with the impression that important facts were being withheld, and that my search for answers was being discouraged. I also felt that my concerns were summarily dismissed as irrelevant. It seemed to me that the MDs involved were far more interested in digging in their heels and defending their positions rather than considering the possibility that I might be providing relevant information and reassessing their patient. I was very sincere when I told both the MDs and the nursing staff that, based on my personal observations, I feared for patients that did not have medically trained family members lo watch over them, and that I was scared to leave Dad's bedside.
I made repeated attempts to get copies of Dad's records, both as his power of attorney and as the executrix of his estate, and it took almost two years to receive any records at all.
V: "I confess that I was not at the hospital nearly as much as P was, I did not make notes, and I was there as his daughter, not as his nurse, but I was not impressed with the care Dad received. Did it cause his life to end any sooner - I don't know. But no one deserves to be treated like that!"
I am certain that some of the information that I have presented seems unbelievable, exaggerated, or untrue. And, it might be easy for some to believe that I really didn't understand what was happening -- that my knowledge and skills might be below average. I offer as "character witness" comments from my military evaluation reports by different raters through the years:
23 September 1988:
24 September 1993:
19 September 1997:
25 September 1998:
28 July 2000:
Plus, there is this from Dad's final discharge records at the second hospital:
"DISC DATE APR 27, 2001
HISTORY OF PRESENT ILLNESS
[Patient] is an unfortunate 78-year-old male. He had not seen a doctor for many years. He had been living in [Dad's city]. He was noted in the hospital to have a Meckel's diverticulum, which was resected. In addition, he was noted to have what appeared to be adenocarcinoma of the colon. A diverting colostomy was inserted due to his obstruction. He was transferred to [here] for wound healing and also preoperative radiotherapy and chemotherapy. He therefore was admitted to [this] unit for rehabilitation and also to complete his radiotherapy and chemotherapy prior to his surgery.
[Patient] initially did relatively well in [this] unit. [He] underwent preoperative chemotherapy treatment. He also was seen by radiation oncology and underwent preoperative radiotherapy. He continued to receive during this period of time occupational therapy and kinesiology therapy in [this] unit. It was somewhat limited due to the weakening effects of his chemotherapy/radiotherapy, he did slowly respond. Eventually, he was able to move from being essentially bedridden to his ambulatory status restored.
Once his chemotherapy and radiotherapy were completed, he underwent definitive surgery in February of 2001. The initial hope was that this would be a curative-type of surgery. However, at the time of surgery, he was noted to have spread of the adenocarcinoma of the colon to outside of the colon, spreading to the peritoneal surface. At this point, he was judged not to be a curative candidate. Once the patient had sufficient recovery, he had reinstitution of his occupational therapy and kinesiotherapy. He again was able to be restored to an ambulatory status prior to discharge.
His daughter felt that she would like to take him home where she lives in [city]. She states she had a home he could stay in and make arrangements for outpatient hospice to continue their care. The patient was made hospice in [this] unit with a change in status in March of 2001. This was discussed with both the patient and the daughter. Certainly, he was expected to live less than six months at this time given the fact that he had locally invasive and spread adenocarcinoma. [Patient] did seem in good spirits and was very eager to leave the hospital for at least a period of time to return home to be with his daughter."
Dad died suddenly on 29 April 2001 -- at home.