Many physicians and patients believe that the quality of medical care has declined. We have no "scientific data" to verify this perception. Physicians appear to work longer hours, yet seem to have less time for the individual patient than in the past. They also have to rely more and more on physician extenders such as physician assistants and nurse practitioners. Many anecdotes have been published that describe the misery patients have to suffer when things don’t go right. Kelly Spaulding, a long-time member of our staff, had her own exposure to the "system." Her story illustrates not an isolated slip we could ascribe to bad luck, but a rather pervasive string of failures. Her touching account may represent an all-too-common patient experience.
J. S. Gravenstein, MD
"To err is human—but, please, don’t overdo it."
He used to smoke. He quit over 20 years ago. Unfortunately, because of smoking, he doesn’t get any respect from the medical community.
My dad has a history of squamous cell cancer. Fourteen years ago a laryngectomy and partial trachea resection were performed followed by radiation. We thought then his (and our) life was over since he loved to sing, tell stories and swim (the only thing he still can’t do is swim!). He breathes through a stoma in his neck. He speaks succinctly, intelligently, and with voice inflection thanks to a T/E puncture and Blom-Singer prosthesis since 1986. An annual check up detected left lower lobe cancer (lobectomy in 1993) and partially blocked heart vessels which resulted in his having to undergo quadruple bypass in 1997. All scans had been negative for cancer since 1993.
On August 1, my dad underwent his annual/routine CT and bone scan. One month went by. My parents were never called with results. They assumed again that the scans were clear. That is, until September 1 when the PA who has worked with my father’s oncologist called with "bad news." She explained that his medical reports had been overlooked and not read for the past month since the oncologist was on vacation. So, SHE (not the oncologist) looked at the scans and diagnosed that "there looks to be malignant cancer in the bottom part of the right lower lobe of his lung. Also, the bone scan revealed a spot on a rib way up high under the left clavicle which appeared to be metastatic stage 4 cancer."
My parents were devastated and called all six kids to rally the troops. My first response was, "but she’s only a PA, and no biopsy has been done." My parents have absolute respect perhaps bordering on fear of the medical community and would never question a diagnosis. Needless to say, we all cried all night long. The next evening, the oncologist called from vacation to profoundly apologize for the premature diagnosis of his PA and mentioned that she had no right to call us. He assured my parents that until he biopsied the lung and bone, we could not tell what it was. He scheduled a biopsy for Monday, September 15.
Monday, 5:45 a.m., Prep for Surgery. My parents found out their oncologist had a detached retina and was having surgery of his own that day. They were assigned a surgeon and pathologist. His oncologist would not be there.
The procedure began at 8:00 a.m. as scheduled. The diagnosis was possible malignancy in the right lower lobe as shown by CT scan. After thorascopy, if the pathologist determined that the lesion was malignant, a right lower thorascopic resection or lobectomy would be performed.
The tumor was determined to be malignant and a 2.5-cm wedge of the lesion and surrounding tissue was removed by thorascopy.
In the waiting room, my family was told that it was malignant but that "they got it all." They also mentioned to my Mom that they would have done a lobectomy but my Dad’s heart couldn’t take it because it was only operating at 30%. My family was again very concerned that only 30% of my Dad’s heart was working. (The words 30% ejection faction were never used, or explained to my family.)
Nevertheless, they were told by the surgeon that my Dad came out of the surgery beautifully and would probably go home in a day or two. He was moved into an ICU. Monday evening he had a bad night and didn’t sleep because he had so much fluid in his chest.
Tuesday morning they removed his chest tube and put him in a regular room. Tuesday afternoon he started to develop more congestion and then high fever. By Tuesday early evening, he was hallucinating and thought he was having dinner with one of the Detroit Lions. By Tuesday evening, my family heard that he had a pneumothorax (but didn’t know what that meant). By 10:00 p.m. the medical staff was concerned that he was in congestive heart failure (also not explained). They emergently cleared a bed in the CICU and moved him in. By 10:30 p.m. the chest tube was reinserted; he felt better and could breathe immediately. A chest x-ray was then taken and showed he had pneumonia. Later, IV antibiotics were given.
Wednesday morning, he was still fighting for breath. Constant supplemental O2 flowed 3 L/min. He was given albuterol and Atrovent breathing treatments every 4 hours followed by suctioning. Wednesday afternoon, he began to get weaker and developed a severe oral yeast infection from the antibiotics. He refused to eat. He couldn’t sleep for fear of not being able to breathe. But by Thursday afternoon, he was stable and taken out of CICU and again moved to a regular room on the 6th floor at the very end of the hall.
Friday morning, they were removing his chest tube. I asked if a chest x-ray had been taken. They said, no, but there had not been any significant drainage in 12 hours, although he had a 103.5°F temperature the night before. I noticed my Dad had written on a note pad, "MY SPEAKING TUBE IS BLOCKED, NOT MY BREATHING TUBE." Apparently, the respiratory therapist didn’t notice that he wears a T/E puncture prosthesis, assumed that he needed suctioning, and when he still couldn’t speak, suctioned him to an SpO2 of 73%. My Dad normally wears a MedicAlert® bracelet that states he is a "Neck Breather." Unfortunately, you can’t wear it in the hospital. I showed her that his prosthesis was blocked due to excess mucus and blood, obviously from the procedure. After recovering his breath, my Dad commented to me, "a hospital is a very dangerous place for someone who can’t speak." He wanted very much to go to the bathroom alone, but was still attached to the Foley. As the day went on, he became increasingly irritable. He continued to sweat through his nightgown and bedclothes every 4 hours or so, I guessed from spiking a fever. The nurses were too busy to change him so my sisters and I changed his bed a few times that day. Also on Friday, one of the oncologists who is a colleague of my Dad’s own oncologist, stopped in to visit my Dad.
Finally that early evening I finally whispered to him, "What is wrong with you?" He said that he was in so much pain that the pills weren’t working and was wondering if that was the effect of the bone cancer. When I asked the nurse for more pain medicine, she informed me that he hadn’t had any all day and that he was on an "as patient requests" schedule. We were SO angry that he went through the entire day without knowing that. The nurse said, "Oh, you didn’t know?" So my Dad was set back by days. Because of the pain he was in, his spirits were low and he couldn’t cough the secretions up by himself which meant more suctioning (which always brought his SpO2 down dangerously low). He got one Vicodin right then, and my Mom instructed the nurse to give him Vicodin EVERY 4 hours unless he was sleeping or refused it. He drifted off to sleep. He was awakened at 1:30 a.m. by the guy in the bed next to him playing loud rap music and then falling asleep with it on. He was also awakened for breathing treatments every 4 hours.
Sunday morning I arrived at 7:00 a.m. so I could finally be there when the surgeon arrived. I bombarded him with questions. He stayed with us for almost half an hour. My Dad said the surgeon had never stayed more than a minute. I specifically asked when could the Foley be removed. It was very difficult for my Dad to get out of bed and move around with oxygen and a Foley collection bag trailing. The surgeon told him that as soon as the epidural catheter was removed, the Foley could come out. I informed him that the epidural fell out on Tuesday evening when they moved him emergently from the regular room into the CICU. And WHY didn’t he know that? He came back in a few minutes very apologetic and said he would have the Foley removed right away. My Dad was very concerned with infection, not because of discomfort and told the doctor that. We asked about the lack of pain medicine the day before. He said, the nurses do that routinely after a chest tube has been removed. I told him how far back that set my Dad emotionally as well as physically due to inability to cough up mucus due to pain. He was apologetic and said he’d make sure that the nurses gave him Vicodin every 4 hours even if he didn’t request it. I told him we’d already done that.
Sunday evening, a respiratory therapist came by to give my Dad a Flovent inhaler. She showed him how to use it by opening his mouth, inhaling quickly, and then holding this mist in his mouth. I pointed out to her that my Dad is a neck breather. She told us that he could just cover his stoma and still inhale through his mouth. I then informed her that his mouth isn’t connected to his lungs, only to his stomach. She was embarrassed. She stopped me in the hall and asked me how to suction him. I explained how. She thought he was in the hospital because he had just had the trach surgery.
Monday the surgeon came in early and told us that my Dad could possibly go home the next day (Tuesday). The hospital’s HomeCare was notified that we would be going home with portable oxygen, oxygen concentrator, nebulizer, and suction machine. The director of HomeCare came by and introduced herself. She said that we ‘d be going home with lots of equipment, and that someone would be by to explain it all to us. Nobody came. Monday was a better day for my Dad. He was exhausted from not sleeping for days and was excited about going home and sleeping in his own bed with my Mom.
Early Tuesday morning before leaving for the hospital, a truck showed up at my parents’ home with all kinds of things. The delivery guy had no idea what we were supposed to do with it. He assured us that someone would come by after my Dad got home and everything would be explained to us. (I was amused by all the oxygen tubing connected to face masks!!) When we arrived at the hospital we noticed two cylinders (E) of oxygen in my Dad’s room on a cart. There was also tubing with a facemask connected to it. I asked, "What do we do with this? He can’t use a face mask! We need a neck mask." The nurse said that had not been ordered. I explained that we couldn’t go home until we had the right mask. Also, we needed some kind of regulator to hook up the tanks (not ordered either). The nursing staff had no idea who was in charge of this (the respiratory staff said, "not us"). HomeCare could not be reached (I had the director paged). She was extremely apologetic and would get somebody there to help.
A couple of hours later (my Dad was SO ready to go home) there was still no regulator. The respiratory therapist on the floor went somewhere and came back with a regulator. She also started taking apart the hose/apparatus and fitted it with the neck mask. She also "dialed" the green flow valve beneath the neck mask to the right concentration (whatever that was). We were terrified of taking our Dad home when we had no idea if that was enough oxygen for the half hour ride home, plus however long it took the HomeCare supply company to bring what we needed. The HomeCare nurse told us someone would call us later in the afternoon.
The nurses finally told my Dad he could leave when the wheelchair arrived. (A half hour later the wheelchair arrived, but he still had the heplock IV in his arm). I called for a nurse to remove it. The floor respiratory therapist came by and showed me how to turn on the portable oxygen and to keep it on ("4") on the regulator. She assured us we would have enough oxygen to get him home. We were free!!
Tuesday afternoon the HomeCare equipment representative came out. He was there for about 5 minutes and could not find what he was looking for. Then, obviously furious, he called his company. Seems none of the correct equipment was brought out for him to hook up. He had to drive across town to the warehouse and get it himself. (My Dad was getting nervous as we had already used one of the tanks that came home with us). The HomeCare equipment representative arrived an hour later. He could not apologize enough. He proceeded to set up loud equipment attached to skinny tubes and some fat tubes. He brought in cases and cases of tracheostomy kits, breathing circuits, and of course, face masks. It got to be quite funny.
The HomeCare nurse didn’t come by, and the HomeCare director never called. At 10:30 that night, I called the number we were given. They called the director of HomeCare at home. She called back very, very apologetic. She didn’t know how this particular case "got so messed up." She assured us that someone would be out at noon on Wednesday. It took the local pharmacy until 11:00 that night to fill the 10 new medications, formulations, things that went in the nebulizer, etc. We stayed up all night, just making sure my Dad could breathe. He was very nervous and shaky. We were unaware that the albuterol and atrovent combination in the nebulizer made him anxious because nobody told us that was a natural effect of the medicine—until the next day.
The doctor ordered HomeCare nurses to come 3 times a week for the first 2 weeks and then as needed. The nurse noted that my Dad ‘s blood pressure had really gone up since leaving the hospital. "Oh, he’s supposed to be taking blood pressure medicine?" Oh, well, that hadn’t been mentioned in all the prescriptions he came home with. It took another day to get his blood pressure back on track.
Basically, everyone we came in contact with was apologizing. First the oncologist, then the PA, then the surgeon, then the CRT, then the HomeCare director, then the HomeCare supply company.
The one thing I should mention is, in this Catholic Hospital someone was available to give him Holy Communion—every day. A wonderful priest was also there to give him the Holy Sacrament of The Anointing of the Sick. We truly wonder what the outcome would have been without it.
On October 6 the lung tumor board met to review my Dad’s case. The final analysis was that all the cancer had been removed and there was no more reason for concern. Not bone cancer, not any cancer. They told him to get strong and go to Tucson for the winter as he and my Mom had planned.
We couldn’t have been happier or more grateful. But to whom?
Dr. Gravenstein, Graduate Research Professor in Anesthesiology at the University of Florida, was a founding member of the APSF Executive Committee and continues his internationally heralded efforts for patient safety. Ms. Spaulding works in that department.