THE LACK OF CARE IN HEALTH CARE
STATE OF OREGON HAS INVESTIGATED OHSU SURGEONS MATTHEW SLATER AND MITHRAN SUKUMAR
UPDATES AT:
As a state institution, Oregon Health & Science University has had limited liability ($200,000.00), giving them more flexibility with staffing. The law made them less responsible, compared to other medical facilities. Their operating costs were less than their competitors. They could be the lowest bidder. They became the $99.00 paint job.
Quoting a recent article in the Portland Oregonian, in part, “Though hospital officials contend that OHSU has an exemplary record of patient safety, the institution and its staff were sued 232 times for malpractice, negligence or wrongful death allegations between 1995 and 2005."In spite of limited recovery, they were still Defendant in 232 lawsuits.
OHSU’s web site lists eight cardiothoracic surgeons. Mithran Sukumar was age 39 when I was referred to him in 2005. His “section chief,” Matthew Slater was age 40. When managing my case, they were over their head and both were too immature and arrogant to admit it. I became inoperable.
By comparison, the website for Providence in Portland listed 17 cardiac surgeons. Their average age was 56. Their youngest surgeon, age 46.
In March 2006 I was at Sloan-Kettering Cancer Center in New York when Dana Reeve died there. I had always liked her. CNN repeated the news every 15 minutes, bringing it to me and other oncology patients in the waiting room. As you might expect, we were interested. Some patients were obviously on chemotherapy. When looking at some somber couples and families I could not identify the patient.
I was there for surgery consultation. A six-month nightmare, a virtual rollercoaster ride, attempting to work with medical providers had led to this day. I am an average Joe, lacking fame and fortune. My story is played out daily in America, the reality of today’s health care system. I have written my obituary and feel compelled to document the ordeal of one patient.
Our doctors are required to be managers of health care. They are not trained for it and many don’t do well with it. Out of sight, out of mind. Stir in workload, apathy, arrogance, greed or a personality disorder and they lose a patient now and then.
On October 10, 2005, a tumor was found in my right chest, outside the lung. It was the fifth occurrence. I had four prior surgeries in that area between 1995 and 2003. The last was in Portland, Oregon. My HMO surgeon said this latest tumor would be more difficult. Scar tissue and radiation damage had to be dealt with and the tumor was near the heart, compressing the superior vena cava. It was 2.8 cm. in diameter. A golf ball is 4.2 cm
There is a history of cancer on my father’s side of the family. My parents are still living.
I knew the day would come when surgery would no longer be an option. But, perhaps this wasn’t the day. Oncologists had said this tumor type doesn’t respond well to chemotherapy and I already had a lifetime dosage of radiation.
I was prepared for anything but medical incompetence.
My HMO referred me to Oregon Health & Science University (OHSU) in Portland. I received a copy of the referral in the mail and noted I was being referred for a bronchoscopy, a procedure to view an airway and/or take a biopsy. I called my HMO to tell them I needed a thoracotomy, not a bronchoscopy. The nurse said I had to call the HMO referral center to set them straight. It wasn’t her responsibility; it was the patient’s responsibility.
I eventually met with an OHSU surgeon on October 31. He was from Southern India and New York, age 39, seemingly mild mannered with a soft voice and limp handshake. He described the pending surgery and said it would be difficult with a 10 per cent chance of fatality. (A heart bypass is about 3 per cent). He would use a heart/lung machine and possibly have to resect a portion of the atrium. The tentative surgery date was November 23.
On November 2, I had numerous tests to determine my fitness for the operation. I was in excellent condition at age 63, a tennis player for 30 years. I had lived most of my life in Southern Oregon. I had been a city police officer and had worked for the state as an investigator. For the past 2 decades I was self-employed as a private investigator, specializing in surveillance and information services.
Another MRI and a CT determined the tumor had grown to 4 cm. I sat with a cardiologist and reviewed the images. I was surprised to see daylight, per se, between the tumor and right atrium. It was obvious that additional growth would contact the atrium. Why was the surgeon saying resection of the atrium might be necessary when the tumor wasn’t touching it?
I received the radiology report on November 8. The atrium was not mentioned.
On November 9, I telephoned the surgeon and spoke with his assistant. Surgery had not been scheduled. She would call me on Friday the 11th with more information. She did not call. I began keeping a log.
She did not call on the following Monday. At that point I was concerned that surgery was not being scheduled.
On Tuesday, November 15, I telephoned OHSU’s thoracic surgery department and received a return call from the surgeon. I had passed all of the tests. He didn’t know why his coordinator had not called me. He doesn’t keep track of when she calls or doesn’t call. I told him I was concerned about the continued growth of the tumor and the eventual involvement of the atrium. He barked, “The atrium is involved.” I felt I was wasting his time.
I asked if they had adequate staff to do the surgery. He said they could do it today if it was an emergency. He didn’t consider this an emergency. He said he wasn’t concerned with additional growth.
He said they were looking at chemotherapy as an option. I said I had no faith in chemotherapy and the thought of pumping poison into my system was disturbing. He yelled into the phone, “Poison, you think it’s poison?” and went on an unprofessional rant. In the same loud voice he talked about oncology advancements and debased previous surgeons because they had not taken a wide margin around the tumors they removed. (The first tumor in 1995 was nearly the size of a grapefruit.) He also said I should not have had radiation in 1996. His prediction of the past was accurate.
During the morning on November 18, I telephoned OHSU’s radiologist, Dr, Mark Gosselin to ask about involvement of the atrium. He reviewed his information and confirmed the tumor was not in contact with the atrium at the time of the November 2, MRI. He confirmed that additional growth would contact the atrium. When I mentioned the possibility of chemotherapy, he said he had never heard of chemo used with that type of tumor. Naturally, that raised questions.
Later that morning I called OHSU’s thoracic surgery department and asked for the surgeon or his assistant. I did not receive a return call. When I called again I learned the surgeon was on the phone with his assistant. The assistant wanted me to know that she would call when she had more information. It had been 5 weeks since the tumor was found and I did not have a surgery date.
At 3:00 p.m. I telephoned OHSU’s patient advocate office to determine why my calls were not returned from thoracic surgery. The surgeon called back at 3:20 p.m. and sounded sullen. He said the surgery date was December 6. There was a cardiac surgeon he wanted to assist that was on vacation. He also would be going on vacation. Pathology was doing stains on previous tumor slides and he was waiting for results.
He said all of my tests had good results. I could tolerate the stress of surgery. I reviewed with him my conversation with the radiologist, Dr. Gosselin. He said he has high regard for Dr. Gosselin but he knows nothing about advancements in oncology. He denied had ever claimed the atrium was involved. What he said was, “it may be involved”. I commented that by December 6, it probably would be involved.
On Tuesday, November 22, he called to tell me there would be no surgery. My tumor is a “high-grade” sarcoma and I should have “some sort of chemotherapy or new or novel therapy that may be available.” (He also used that wording in his report) He would not perform the surgery because, “It was not in your best interest”.
He was going on vacation.
I learned the OHSU tumor board had met on November 8, 2005 and noted, “The malignant fibrous tumor on the pleura is not likely to respond to chemotherapy; however, could possibly be sensitive to Gleevec.” Radiation was not an option because of previous exposure.
On November 17, OHSU pathology had received my December 2003 tumor slides from my HMO. Their November 22, 2005 report noted, “The tumor continues to defy sub classification.”
In December I met with an oncologist at my HMO. He said Gleevec was not an option. There was nothing “new or novel” available. There was a 70 per cent chance the tumor would respond to chemo and shrink somewhat but that treatment would not be curative.
I was concerned that the process of hospitalizing me twice, 30 days apart for intense neo-adjuvant chemotherapy would weaken my immune system. Recovery from surgery and the risk of infection were concerns.
My HMO surgeon contacted M.D. Anderson Cancer Center in Houston and found a surgeon willing to remove the tumor. I purchased an airline ticket.
On January 1, 2006, another MRI determined the tumor had grown to 5.7 cm.
Three days before my departure to Houston, M.D. Anderson called to say they would not accept my HMO. (My HMO has 500 doctors) They wanted $25,000 up front before I could meet with their surgeon. They did not accept studies from other facilities.
M.D. Anderson owns a hotel across the street, connected by a skywalk and operated by Marriott. They do not give their patients a price break. I declined to be treated there.
My HMO surgeon spoke with another OHSU surgeon who was willing to remove the tumor. I would have to see an OHSU oncologist first.
I met with the oncologist and confirmed there was little chance it was curative with chemotherapy.
On February 6, I met the second OHSU surgeon. He was the cardiothoracic “section chief”, a cocky little man, age 41. In the presence of another surgeon he said he was aware of the problem I had with the previous OHSU surgeon and that wasn’t a problem for him. We would start at “ground zero”. He wasn’t concerned about the size of the tumor.
He drew a diagram of the area to be resected. The surgery would take a wide margin around the tumor. I retained his diagram.
He had reviewed my films and was concerned about possible new growth in the lower pericardium. (It wasn’t noted in the last radiology report.) He wanted a $4,700.00 positron emission tomography cat scan (Pet CT) to determine if the cancer had migrated to the lower heart. If the test was negative, he wrote, "It would be reasonable to entertain surgical resection." When he asked if I would be available for the test, I said my business had been going downhill since October. I had lots of time because my clients think I am dying. He replied, “We’re all dying”. My inner voice was screaming, “We are not all going broke though, are we?”
The Pet Ct was conducted on February 10 and I picked up the results at OHSU on February 13. It was negative. The size of the tumor was not noted. It was against the heart and wrapping around the pulmonary artery. I spoke with the radiologist that wrote the report to determine the size of the tumor. He said it wasn’t his job to determine the size and he did not offer to make it his job.
I waited by the phone for two weeks to hear my fate. On February 24, I called the surgeon. He wasn't available but would return my call.
On February 25, I telephoned my HMO and learned the OHSU surgeon had decided to not do the surgery. He never did call me. He had recommended a specific surgeon at Sloan-Kettering that I should contact.
He said the tumor is potentially non-resectable due to invasion of surrounding tissues, although there was no evidence of that the previous tumors had invaded tissues, they remained encapsulated.
His letter alleged I was, “disinterested in adjuvant or neo-adjuvant chemotherapy”. That isn’t true. I had asked OHSU’s oncologist about adjuvant treatment. He said there would be no point because it wouldn’t be curative. Who wouldn’t be disinterested? Had this doctor looked at my file?
On 2/23/06 he had sent a letter to my HMO, dismissing me as a patient. It was, “Re: James Swan”. My name is Robert.
This doctor had his residency at OHSU 1994-1999 and was promoted to section chief in 2004. He is the best they have. His credits say he is a “teacher and mentor” in OHSU’s residency program. That is disturbing. He has the credentials, the big home and the Volvo, but in the true sense of the word, he just pretends to be a doctor.
A couple of people I know, one of them an attorney, suggested the OHSU doctors viewed me as a threat. They don’t want to be questioned. Their egos can’t handle it. If I had limited ability in a position where people live or die, I would consider every patient (or their family) a threat.
Where are the cardiothoracic surgeons that have been doing this for 20 years, somebody mature and with more experience? Can OHSU not afford them?
OHSU and Portland taxpayers are building a tram costing tens of millions of dollars from the waterfront on the Willamette River to their hilltop hospital. Patients will be treated to a great view while in route to mediocre health care.
Both OHSU surgeons said they were not concerned with the size of the tumor and were not concerned with additional growth. Their lack of concern was their hallmark.
My inability to accept the actions of these doctors is rooted in my history with actual care providers. As a child in Medford, Oregon our family doctor, a surgeon, made house calls.
In February 2006 I received a letter of apology from the first OHSU surgeon. He was responding to a letter I had sent to him and OHSU administration two months earlier. It was obligatory gibberish they spew to prevent lawsuits. He was forced to write it, judging from his copy list. He was sorry I wasn’t satisfied with his care. What care was he speaking of?
The letter said his office had no record of me calling on November 18. All of my calls to his office were long distance or from a cell phone. There is a record.
Quoting a recent article in the Portland Oregonian, in part, “Though hospital officials contend that OHSU has an exemplary record of patient safety, the institution and its staff were sued 232 times for malpractice, negligence or wrongful death allegations between 1995 and 2005.
Among the 58 cases still working their way through the courts is a $10 million lawsuit by a man who allegedly had the wrong section of his brain removed by an OHSU doctor and a $5 million lawsuit by a former Portland TV anchorman who is partially paralyzed after what he claims was a botched back surgery.
Jordaan Michael Clarke is nearly 8 years old, but he doesn't know it. He spends his days lying motionless on the sofa in his grandparents' home in Longview, Wash.
Sometimes he smiles. Sometimes he cries. He's not aware of that, either. He's worn the same gym shoes for a year without a single scuff because they've never touched the floor.
When Jordaan was 3 months old in May 1998, he underwent a successful open-heart surgery at Oregon Health & Science University. But as he recovered in intensive care, his breathing tube became dislodged.
OHSU staff failed to correct the problem for 14 minutes, the hospital later admitted, leaving Jordaan with permanent and profound brain damage. Today, Jordaan exists in a condition numb to the world -- blind, quadriplegic and fed through a tube. He will require round-the-clock care for life at an estimated cost of $11 million.
Soon after Jordaan's breathing tube became dislodged, Sari Clarke noticed changes in her infant son. She couldn't get him to look in her eyes, and his left hand was curled and stiff.
She remembers badgering hospital staff to tell her what was wrong, with no luck. Finally, she said, she insisted on a brain scan, which showed major neurological damage.
Clarke said OHSU sent Jordaan home with a hospice nurse. Hospital staff had never told her they expected Jordaan to die. "When I found out," Clarke said, "I sent the nurse away. I felt so betrayed."
It wasn't until Sari Clarke decided to sue that she discovered a little-known fact: Oregon law limits the damages she can recover from OHSU to $200,000, an amount already dwarfed by Jordaan's expenses.
In an interview with The Oregonian, university President Dr. Peter Kohler defended the cap, saying that losing it could increase costs and cut into patients' services. As some doctors have fled specialties such as neurosurgery in the face of rising insurance costs, he said, OHSU continues to handle some of the state's most complex surgeries and help its neediest patients.”
Dr. Kohler also commented that the $200,000.00 cap was for the “greater good.” That was Hitler’s approach. The individual doesn’t matter that much. It is a perfect setting for mediocre doctors. They attach themselves to their host and their worries are over.
Let’s assume Dr. Kohler is the patient instead of me. What would be different? What is the chance Dr. Kohler would be writing his obituary? The answer is simple but let’s look at it anyway. Would the first OHSU surgeon yell at him on the phone or ignore his phone calls and dismiss him as a patient? Of course he wouldn’t. The next obvious question is, why is Dr. Kohler’s life, his well-being and recovery more important than mine?
If the other OHSU surgeon had Dr. Kohler as a patient would he act immature during a patient consultation. Would he dismiss Dr. Kohler as a patient and fail to call him? Of course he wouldn’t. Are some patients more important than others? Of course they are.
If Dr. Kohler’s life were on the line, the best medical talent in the northwest would put their heads together for the best medical solution.
If Dr. Kohler’s child was recovering from heart surgery, you can bet that child would recover with no screw-up on the surgery recovery floor.
OHSU has a patient advocate office but the name is misleading. If there is a conflict between a patient and a doctor, they head for the hills. I called that office twice (long distance or cell phone) and e-mailed them once and there was no follow-up. A true patient advocate can’t be on the hospital payroll. Dr. Kohler knows that but he plays the game anyway.
Another example of today’s health care: I telephoned the office of the surgeon that removed tumors in 1995 and 1996 and requested a return call. He was a former neighbor and I had faxed him occasionally through the years to keep him apprised. Several years ago he stopped me in the hallway at the hospital to ask how things were going. I hadn’t seen him since and assumed he was interested in my status. I telephoned his office, looking for guidance in locating a quality cardiothoracic surgeon. His nurse called back and said she had talked to him. He told her there was nothing he could do for me and that I should make an appointment. There is no profit in being a humanitarian.
My appointment at Sloan-Kettering was on March 7. I waited in reception for 2 ½ hours past my appointment time before being taken to an examination room where I waited for another hour.
The doctor was a small gentleman, bearded, with reading glasses on his nose and wearing a turban. He had been in the United States since 1964. He apologized for keeping me waiting and apologized because he had been unable to open the CD’s I brought from my HMO and OHSU. They contained my films. He would have to open them at another hospital. When I told him I could open them on my laptop on the counter behind him, he didn’t seem to hear me.
He didn’t know why OHSU had referred me to him. He wasn’t a cardiothoracic surgeon and Sloan-Kettering doesn’t have a heart/lung machine. He could possibly do the surgery but would have to look at the films before deciding.
OHSU’s best cardiothoracic surgeon had referred me to a thoracic surgeon to remove a tumor that was fully involved with the heart!
I reviewed my previous surgeries with him. He said my first surgery should not have been a sternotomy (through the front) because the esophagus was involved and the lungs must have been in the way. I should have had a thoracotomy.
He said he would review the films and get back to me. I returned to the west coast.
When I hadn’t heard from the Sloan-Kettering surgeon in 10 days, I telephoned his office. He had not found time to open the CD’s. He would be calling me shortly.
I waited another 20 days before calling again. He returned my call within a couple of hours. He would do the surgery. He wasn’t sure he could remove the entire tumor. Anything left would be treated with radiation seeding. I made an appointment to meet with him on April 25 with surgery scheduled April 26. Pre-surgery testing would be necessary at Sloan-Kettering.
I returned to New York on April 23, for pre-surgery testing that included pulmonary tests, an MRI and a stress echocardiogram, the same tests I had at OHSU on November 2.
I was still playing tennis singles, albeit for shorter periods. I had no outward signs of impairment and could easily run up two flights of stairs.
I telephoned the radiation oncologist that treated me in 1996. He had retired. I had admired his professional demeanor. He is the most intelligent, caring doctor I have known. He said he would have denied neo-adjuvant chemotherapy for the same reasons. He had confidence in radiation seeding and wished me the very best.
On April 25, I arrived for my appointment at Sloan-Kettering. I waited in reception for 45 minutes before they moved me to an exam room. I waited there for two hours before the doctor entered. The first thing he said was, “What’s going on with you?” I told him I was hospitalized a month earlier for a cardioversion. I had atrial flutter, causing my heart rate to vary from 80 to 160 several times a minute in reaction to the tumor. I was shocked back to sinus rhythm and received medication.
He asked, “Have you ever had chemotherapy at all”? He apparently was not familiar with my file. When I said I hadn’t, he said he had looked at my MRI and was concerned about the size of the tumor. It had “invaded” the right bronchus and was blocking some airflow to the right lung. I advised him that it was probably pushing against the bronchus because these tumors had not been inclined to invade tissue. He said that was possible but felt that surgery might require him to remove the right lung. That would debilitate me and hinder recovery from future chemotherapy.
I asked what happened to the radiation seeding treatment he had mentioned a few weeks earlier. He said there was too much tumor to deal with.
There was a new growth measuring 4 cm in the right lung. When I questioned how large the primary tumor was, he said it was about 6 cm X 7 cm. He did not have a radiology report. There appeared to be fluid collecting in the right lung.
He recommended chemotherapy to shrink the tumors and then surgery could still be an option.
Before leaving I asked if I could make a comment. He said, “Sure”. I recommended he not leave cancer patients sitting alone in an exam room for 2 hours with nothing to read and nobody to talk to. They are stuck there with only their thoughts. Allow them to stay in reception where they can walk around, watch television, see other people and look out the window.
Patients are confined in a small, silent, sterile room with instruments, anatomy posters and latex gloves. He agreed and apologized and said that was a rare occurrence. I told him I had waited in the same room for an hour on my previous visit. Sensory deprivation is used in prisons for punishment.
I also commented that he and the others might be great surgeons but are all lousy managers. They wasted several months and have shortened my life. He lowered his eyes and looked at the floor. I hadn’t raised my voice but he appeared shaken.
This doctor is a gentle soul. I can’t imagine what he has seen in the past 30 years. He held my hands in his with the compassion expected of a doctor. I wasn’t upset with him. He is overwhelmed by volume and responsibility. The bean counters keep him taxed to the limit. I doubt he had opened the film CD’s before I returned to New York.
Hours after I left his office, Sloan-Kettering called twice to question why I had not kept my appointment for pre-admission testing, blood tests, etc. Nobody had cancelled my surgery.
The president and C.E.O. of Sloan-Kettering is Dr. Harold Varmus. He advertises his hospital as, “The world’s oldest private institution dedicated to patient care” and eliminating the burden of disease. His doctor didn’t contact me for a month and only then, after I called him. His doctor can’t keep track of potential patients or even those waiting in reception. We now know that being the oldest means nothing. It is advertising.
Dr. Varmus would tell us that Sloan-Kettering is the best cancer hospital in America. He could be right.
Twenty-seven weeks had passed since the tumor was found. The growth was well documented as it became inoperable and migrated to the right lung. It was now 7.5 cm X 5.5 cm X 6.5 cm compared to 6.6 X 5 X 4.7 in February and 2.8 last October. Three surgeons had agreed to do the surgery and all had changed their minds. I had 4 MRI’s, a CT, a PET CT, 2 X-rays, 2 blood tests, a sniff test, a cardio-conversion, 3 EKG’s, 2 pulmonary function tests and 2 stress echocardiograms. The worst part was the waiting. Shoot me for Christ’s sake!
I remained in New York and Boston for 2 weeks. New York City sweeps you along and overflows your senses. Minute to minute you see someone less fortunate than yourself. Not the place to wallow in self-pity.
Boston has old graveyards downtown. The thin, weathered headstones of our founders are adjacent to noisy streets and high-rise buildings, a good place for a small town boy to put his life in perspective.
Our medical schools are teaching technology but are not teaching the curative properties of compassion. A doctor without compassion can be as destructive as a cancer.
Our medical system is broken. I would bet my life on it.
Robert (Bob) Swan
360-834-6376
oregonpi@msn.com
OHSU surgeons mentioned: Mithran Sukumar and Matthew Slater
Sloan-Kettering surgeon: Manjit Singh Bains
Response from Roy Magnusson, Chief Medical Officer, OHSU Hospitals and Clinics (In part): “You have distributed literally hundreds of copies of a very negative letter about OHSU and its physicians via email and in person on our campus. I request that you stop doing so. In my review of the care provided by our physicians, I can find nothing that would warrant your very personal and disparaging remarks and aggressive efforts to make them public."
To: Dr. Magnusson (Chief Medical Officer, OHSU Hospitals and Clinics):
Please advise your attorney that I am in receipt of your May 19, letter. It must be difficult to defend your surgeons, Sukumar and Slater. It detracts from your mission as a doctor. I assume that is your mission.
I wake up every day with the taste of blood in my mouth. I won't apologize for getting personal. Both of your physicians ordered tests and then ignored me. That is in the record. What was the "care" I received that you reviewed?
Your boilerplate response to patient complaints doesn't work here.
My campaign against OHSU was interrupted while I was giving away my possessions. I distributed the TLC document at OHSU again on May 18 and May 23. On May 26, a friend put another 60 copies on vehicles in your garage.
On May 23 I met with my Kaiser oncologist, a very kind man from Belarus. There is still nothing "new or novel" out there. I declined chemo because there is a 25% chance that it would help temporarily. When I offered him a copy of the TLC, he had already read it. Somebody had put it on his desk. He asked for permission to circulate it. When I told him I was on my way to OHSU to pass it out, he said, "They have to change their ways."
My next campaign will be to enlighten doctors at hospitals and clinics within 500 miles of Portland.
“Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope.” Bobby Kennedy 1966
Bob Swan
360-834-6376
On Friday, June 23 I returned a telephone call to Kathleen Haley, executive director of Oregon Board of Medical Examiners. She was scheduled to speak to OHSU residents that date and asked if she could quote from the information I had sent to her.
On 6-26-06 I received a message from an OHSU doctor, advising that OHSU was blocking my e-mail. He requested this document sent to his home.
OHSU blocking my e-mail causes me to be more aggressive in conveying this message.
On 6-28-06 I received a letter from Oregon Board of Medical Examiners. Mithran Sukumar and Matthew Slater would be investigated. The attorney general’s office would subpoena my records from OHSU.
In March 2006 I was at Sloan-Kettering Cancer Center in New York when Dana Reeve died there. I had always liked her. CNN repeated the news every 15 minutes, bringing it to me and other oncology patients in the waiting room. As you might expect, we were interested. Some patients were obviously on chemotherapy. When looking at some somber couples and families I could not identify the patient.
I was there for surgery consultation. A six-month nightmare, a virtual rollercoaster ride, attempting to work with medical providers had led to this day. I am an average Joe, lacking fame and fortune. My story is played out daily in America, the reality of today’s health care system. I have written my obituary and feel compelled to document the ordeal of one patient.
Our doctors are required to be managers of health care. They are not trained for it and many don’t do well with it. Out of sight, out of mind. Stir in workload, apathy, arrogance, greed or a personality disorder and they lose a patient now and then.
On October 10, 2005, a tumor was found in my right chest, outside the lung. It was the fifth occurrence. I had four prior surgeries in that area between 1995 and 2003. The last was in Portland, Oregon. My HMO surgeon said this latest tumor would be more difficult. Scar tissue and radiation damage had to be dealt with and the tumor was near the heart, compressing the superior vena cava. It was 2.8 cm. in diameter. A golf ball is 4.2 cm
There is a history of cancer on my father’s side of the family. My parents are still living.
I knew the day would come when surgery would no longer be an option. But, perhaps this wasn’t the day. Oncologists had said this tumor type doesn’t respond well to chemotherapy and I already had a lifetime dosage of radiation.
I was prepared for anything but medical incompetence.
My HMO referred me to Oregon Health & Science University (OHSU) in Portland. I received a copy of the referral in the mail and noted I was being referred for a bronchoscopy, a procedure to view an airway and/or take a biopsy. I called my HMO to tell them I needed a thoracotomy, not a bronchoscopy. The nurse said I had to call the HMO referral center to set them straight. It wasn’t her responsibility; it was the patient’s responsibility.
I eventually met with an OHSU surgeon on October 31. He was from Southern India and New York, age 39, seemingly mild mannered with a soft voice and limp handshake. He described the pending surgery and said it would be difficult with a 10 per cent chance of fatality. (A heart bypass is about 3 per cent). He would use a heart/lung machine and possibly have to resect a portion of the atrium. The tentative surgery date was November 23.
On November 2, I had numerous tests to determine my fitness for the operation. I was in excellent condition at age 63, a tennis player for 30 years. I had lived most of my life in Southern Oregon. I had been a city police officer and had worked for the state as an investigator. For the past 2 decades I was self-employed as a private investigator, specializing in surveillance and information services.
Another MRI and a CT determined the tumor had grown to 4 cm. I sat with a cardiologist and reviewed the images. I was surprised to see daylight, per se, between the tumor and right atrium. It was obvious that additional growth would contact the atrium. Why was the surgeon saying resection of the atrium might be necessary when the tumor wasn’t touching it?
I received the radiology report on November 8. The atrium was not mentioned.
On November 9, I telephoned the surgeon and spoke with his assistant. Surgery had not been scheduled. She would call me on Friday the 11th with more information. She did not call. I began keeping a log.
She did not call on the following Monday. At that point I was concerned that surgery was not being scheduled.
On Tuesday, November 15, I telephoned OHSU’s thoracic surgery department and received a return call from the surgeon. I had passed all of the tests. He didn’t know why his coordinator had not called me. He doesn’t keep track of when she calls or doesn’t call. I told him I was concerned about the continued growth of the tumor and the eventual involvement of the atrium. He barked, “The atrium is involved.” I felt I was wasting his time.
I asked if they had adequate staff to do the surgery. He said they could do it today if it was an emergency. He didn’t consider this an emergency. He said he wasn’t concerned with additional growth.
He said they were looking at chemotherapy as an option. I said I had no faith in chemotherapy and the thought of pumping poison into my system was disturbing. He yelled into the phone, “Poison, you think it’s poison?” and went on an unprofessional rant. In the same loud voice he talked about oncology advancements and debased previous surgeons because they had not taken a wide margin around the tumors they removed. (The first tumor in 1995 was nearly the size of a grapefruit.) He also said I should not have had radiation in 1996. His prediction of the past was accurate.
During the morning on November 18, I telephoned OHSU’s radiologist, Dr, Mark Gosselin to ask about involvement of the atrium. He reviewed his information and confirmed the tumor was not in contact with the atrium at the time of the November 2, MRI. He confirmed that additional growth would contact the atrium. When I mentioned the possibility of chemotherapy, he said he had never heard of chemo used with that type of tumor. Naturally, that raised questions.
Later that morning I called OHSU’s thoracic surgery department and asked for the surgeon or his assistant. I did not receive a return call. When I called again I learned the surgeon was on the phone with his assistant. The assistant wanted me to know that she would call when she had more information. It had been 5 weeks since the tumor was found and I did not have a surgery date.
At 3:00 p.m. I telephoned OHSU’s patient advocate office to determine why my calls were not returned from thoracic surgery. The surgeon called back at 3:20 p.m. and sounded sullen. He said the surgery date was December 6. There was a cardiac surgeon he wanted to assist that was on vacation. He also would be going on vacation. Pathology was doing stains on previous tumor slides and he was waiting for results.
He said all of my tests had good results. I could tolerate the stress of surgery. I reviewed with him my conversation with the radiologist, Dr. Gosselin. He said he has high regard for Dr. Gosselin but he knows nothing about advancements in oncology. He denied had ever claimed the atrium was involved. What he said was, “it may be involved”. I commented that by December 6, it probably would be involved.
On Tuesday, November 22, he called to tell me there would be no surgery. My tumor is a “high-grade” sarcoma and I should have “some sort of chemotherapy or new or novel therapy that may be available.” (He also used that wording in his report) He would not perform the surgery because, “It was not in your best interest”.
He was going on vacation.
I learned the OHSU tumor board had met on November 8, 2005 and noted, “The malignant fibrous tumor on the pleura is not likely to respond to chemotherapy; however, could possibly be sensitive to Gleevec.” Radiation was not an option because of previous exposure.
On November 17, OHSU pathology had received my December 2003 tumor slides from my HMO. Their November 22, 2005 report noted, “The tumor continues to defy sub classification.”
In December I met with an oncologist at my HMO. He said Gleevec was not an option. There was nothing “new or novel” available. There was a 70 per cent chance the tumor would respond to chemo and shrink somewhat but that treatment would not be curative.
I was concerned that the process of hospitalizing me twice, 30 days apart for intense neo-adjuvant chemotherapy would weaken my immune system. Recovery from surgery and the risk of infection were concerns.
My HMO surgeon contacted M.D. Anderson Cancer Center in Houston and found a surgeon willing to remove the tumor. I purchased an airline ticket.
On January 1, 2006, another MRI determined the tumor had grown to 5.7 cm.
Three days before my departure to Houston, M.D. Anderson called to say they would not accept my HMO. (My HMO has 500 doctors) They wanted $25,000 up front before I could meet with their surgeon. They did not accept studies from other facilities.
M.D. Anderson owns a hotel across the street, connected by a skywalk and operated by Marriott. They do not give their patients a price break. I declined to be treated there.
My HMO surgeon spoke with another OHSU surgeon who was willing to remove the tumor. I would have to see an OHSU oncologist first.
I met with the oncologist and confirmed there was little chance it was curative with chemotherapy.
On February 6, I met the second OHSU surgeon. He was the cardiothoracic “section chief”, a cocky little man, age 41. In the presence of another surgeon he said he was aware of the problem I had with the previous OHSU surgeon and that wasn’t a problem for him. We would start at “ground zero”. He wasn’t concerned about the size of the tumor.
He drew a diagram of the area to be resected. The surgery would take a wide margin around the tumor. I retained his diagram.
He had reviewed my films and was concerned about possible new growth in the lower pericardium. (It wasn’t noted in the last radiology report.) He wanted a $4,700.00 positron emission tomography cat scan (Pet CT) to determine if the cancer had migrated to the lower heart. If the test was negative, he wrote, "It would be reasonable to entertain surgical resection." When he asked if I would be available for the test, I said my business had been going downhill since October. I had lots of time because my clients think I am dying. He replied, “We’re all dying”. My inner voice was screaming, “We are not all going broke though, are we?”
The Pet Ct was conducted on February 10 and I picked up the results at OHSU on February 13. It was negative. The size of the tumor was not noted. It was against the heart and wrapping around the pulmonary artery. I spoke with the radiologist that wrote the report to determine the size of the tumor. He said it wasn’t his job to determine the size and he did not offer to make it his job.
I waited by the phone for two weeks to hear my fate. On February 24, I called the surgeon. He wasn't available but would return my call.
On February 25, I telephoned my HMO and learned the OHSU surgeon had decided to not do the surgery. He never did call me. He had recommended a specific surgeon at Sloan-Kettering that I should contact.
He said the tumor is potentially non-resectable due to invasion of surrounding tissues, although there was no evidence of that the previous tumors had invaded tissues, they remained encapsulated.
His letter alleged I was, “disinterested in adjuvant or neo-adjuvant chemotherapy”. That isn’t true. I had asked OHSU’s oncologist about adjuvant treatment. He said there would be no point because it wouldn’t be curative. Who wouldn’t be disinterested? Had this doctor looked at my file?
On 2/23/06 he had sent a letter to my HMO, dismissing me as a patient. It was, “Re: James Swan”. My name is Robert.
This doctor had his residency at OHSU 1994-1999 and was promoted to section chief in 2004. He is the best they have. His credits say he is a “teacher and mentor” in OHSU’s residency program. That is disturbing. He has the credentials, the big home and the Volvo, but in the true sense of the word, he just pretends to be a doctor.
A couple of people I know, one of them an attorney, suggested the OHSU doctors viewed me as a threat. They don’t want to be questioned. Their egos can’t handle it. If I had limited ability in a position where people live or die, I would consider every patient (or their family) a threat.
Where are the cardiothoracic surgeons that have been doing this for 20 years, somebody mature and with more experience? Can OHSU not afford them?
OHSU and Portland taxpayers are building a tram costing tens of millions of dollars from the waterfront on the Willamette River to their hilltop hospital. Patients will be treated to a great view while in route to mediocre health care.
Both OHSU surgeons said they were not concerned with the size of the tumor and were not concerned with additional growth. Their lack of concern was their hallmark.
My inability to accept the actions of these doctors is rooted in my history with actual care providers. As a child in Medford, Oregon our family doctor, a surgeon, made house calls.
In February 2006 I received a letter of apology from the first OHSU surgeon. He was responding to a letter I had sent to him and OHSU administration two months earlier. It was obligatory gibberish they spew to prevent lawsuits. He was forced to write it, judging from his copy list. He was sorry I wasn’t satisfied with his care. What care was he speaking of?
The letter said his office had no record of me calling on November 18. All of my calls to his office were long distance or from a cell phone. There is a record.
Quoting a recent article in the Portland Oregonian, in part, “Though hospital officials contend that OHSU has an exemplary record of patient safety, the institution and its staff were sued 232 times for malpractice, negligence or wrongful death allegations between 1995 and 2005.
Among the 58 cases still working their way through the courts is a $10 million lawsuit by a man who allegedly had the wrong section of his brain removed by an OHSU doctor and a $5 million lawsuit by a former Portland TV anchorman who is partially paralyzed after what he claims was a botched back surgery.
Jordaan Michael Clarke is nearly 8 years old, but he doesn't know it. He spends his days lying motionless on the sofa in his grandparents' home in Longview, Wash.
Sometimes he smiles. Sometimes he cries. He's not aware of that, either. He's worn the same gym shoes for a year without a single scuff because they've never touched the floor.
When Jordaan was 3 months old in May 1998, he underwent a successful open-heart surgery at Oregon Health & Science University. But as he recovered in intensive care, his breathing tube became dislodged.
OHSU staff failed to correct the problem for 14 minutes, the hospital later admitted, leaving Jordaan with permanent and profound brain damage. Today, Jordaan exists in a condition numb to the world -- blind, quadriplegic and fed through a tube. He will require round-the-clock care for life at an estimated cost of $11 million.
Soon after Jordaan's breathing tube became dislodged, Sari Clarke noticed changes in her infant son. She couldn't get him to look in her eyes, and his left hand was curled and stiff.
She remembers badgering hospital staff to tell her what was wrong, with no luck. Finally, she said, she insisted on a brain scan, which showed major neurological damage.
Clarke said OHSU sent Jordaan home with a hospice nurse. Hospital staff had never told her they expected Jordaan to die. "When I found out," Clarke said, "I sent the nurse away. I felt so betrayed."
It wasn't until Sari Clarke decided to sue that she discovered a little-known fact: Oregon law limits the damages she can recover from OHSU to $200,000, an amount already dwarfed by Jordaan's expenses.
In an interview with The Oregonian, university President Dr. Peter Kohler defended the cap, saying that losing it could increase costs and cut into patients' services. As some doctors have fled specialties such as neurosurgery in the face of rising insurance costs, he said, OHSU continues to handle some of the state's most complex surgeries and help its neediest patients.”
Dr. Kohler also commented that the $200,000.00 cap was for the “greater good.” That was Hitler’s approach. The individual doesn’t matter that much. It is a perfect setting for mediocre doctors. They attach themselves to their host and their worries are over.
Let’s assume Dr. Kohler is the patient instead of me. What would be different? What is the chance Dr. Kohler would be writing his obituary? The answer is simple but let’s look at it anyway. Would the first OHSU surgeon yell at him on the phone or ignore his phone calls and dismiss him as a patient? Of course he wouldn’t. The next obvious question is, why is Dr. Kohler’s life, his well-being and recovery more important than mine?
If the other OHSU surgeon had Dr. Kohler as a patient would he act immature during a patient consultation. Would he dismiss Dr. Kohler as a patient and fail to call him? Of course he wouldn’t. Are some patients more important than others? Of course they are.
If Dr. Kohler’s life were on the line, the best medical talent in the northwest would put their heads together for the best medical solution.
If Dr. Kohler’s child was recovering from heart surgery, you can bet that child would recover with no screw-up on the surgery recovery floor.
OHSU has a patient advocate office but the name is misleading. If there is a conflict between a patient and a doctor, they head for the hills. I called that office twice (long distance or cell phone) and e-mailed them once and there was no follow-up. A true patient advocate can’t be on the hospital payroll. Dr. Kohler knows that but he plays the game anyway.
Another example of today’s health care: I telephoned the office of the surgeon that removed tumors in 1995 and 1996 and requested a return call. He was a former neighbor and I had faxed him occasionally through the years to keep him apprised. Several years ago he stopped me in the hallway at the hospital to ask how things were going. I hadn’t seen him since and assumed he was interested in my status. I telephoned his office, looking for guidance in locating a quality cardiothoracic surgeon. His nurse called back and said she had talked to him. He told her there was nothing he could do for me and that I should make an appointment. There is no profit in being a humanitarian.
My appointment at Sloan-Kettering was on March 7. I waited in reception for 2 ½ hours past my appointment time before being taken to an examination room where I waited for another hour.
The doctor was a small gentleman, bearded, with reading glasses on his nose and wearing a turban. He had been in the United States since 1964. He apologized for keeping me waiting and apologized because he had been unable to open the CD’s I brought from my HMO and OHSU. They contained my films. He would have to open them at another hospital. When I told him I could open them on my laptop on the counter behind him, he didn’t seem to hear me.
He didn’t know why OHSU had referred me to him. He wasn’t a cardiothoracic surgeon and Sloan-Kettering doesn’t have a heart/lung machine. He could possibly do the surgery but would have to look at the films before deciding.
OHSU’s best cardiothoracic surgeon had referred me to a thoracic surgeon to remove a tumor that was fully involved with the heart!
I reviewed my previous surgeries with him. He said my first surgery should not have been a sternotomy (through the front) because the esophagus was involved and the lungs must have been in the way. I should have had a thoracotomy.
He said he would review the films and get back to me. I returned to the west coast.
When I hadn’t heard from the Sloan-Kettering surgeon in 10 days, I telephoned his office. He had not found time to open the CD’s. He would be calling me shortly.
I waited another 20 days before calling again. He returned my call within a couple of hours. He would do the surgery. He wasn’t sure he could remove the entire tumor. Anything left would be treated with radiation seeding. I made an appointment to meet with him on April 25 with surgery scheduled April 26. Pre-surgery testing would be necessary at Sloan-Kettering.
I returned to New York on April 23, for pre-surgery testing that included pulmonary tests, an MRI and a stress echocardiogram, the same tests I had at OHSU on November 2.
I was still playing tennis singles, albeit for shorter periods. I had no outward signs of impairment and could easily run up two flights of stairs.
I telephoned the radiation oncologist that treated me in 1996. He had retired. I had admired his professional demeanor. He is the most intelligent, caring doctor I have known. He said he would have denied neo-adjuvant chemotherapy for the same reasons. He had confidence in radiation seeding and wished me the very best.
On April 25, I arrived for my appointment at Sloan-Kettering. I waited in reception for 45 minutes before they moved me to an exam room. I waited there for two hours before the doctor entered. The first thing he said was, “What’s going on with you?” I told him I was hospitalized a month earlier for a cardioversion. I had atrial flutter, causing my heart rate to vary from 80 to 160 several times a minute in reaction to the tumor. I was shocked back to sinus rhythm and received medication.
He asked, “Have you ever had chemotherapy at all”? He apparently was not familiar with my file. When I said I hadn’t, he said he had looked at my MRI and was concerned about the size of the tumor. It had “invaded” the right bronchus and was blocking some airflow to the right lung. I advised him that it was probably pushing against the bronchus because these tumors had not been inclined to invade tissue. He said that was possible but felt that surgery might require him to remove the right lung. That would debilitate me and hinder recovery from future chemotherapy.
I asked what happened to the radiation seeding treatment he had mentioned a few weeks earlier. He said there was too much tumor to deal with.
There was a new growth measuring 4 cm in the right lung. When I questioned how large the primary tumor was, he said it was about 6 cm X 7 cm. He did not have a radiology report. There appeared to be fluid collecting in the right lung.
He recommended chemotherapy to shrink the tumors and then surgery could still be an option.
Before leaving I asked if I could make a comment. He said, “Sure”. I recommended he not leave cancer patients sitting alone in an exam room for 2 hours with nothing to read and nobody to talk to. They are stuck there with only their thoughts. Allow them to stay in reception where they can walk around, watch television, see other people and look out the window.
Patients are confined in a small, silent, sterile room with instruments, anatomy posters and latex gloves. He agreed and apologized and said that was a rare occurrence. I told him I had waited in the same room for an hour on my previous visit. Sensory deprivation is used in prisons for punishment.
I also commented that he and the others might be great surgeons but are all lousy managers. They wasted several months and have shortened my life. He lowered his eyes and looked at the floor. I hadn’t raised my voice but he appeared shaken.
This doctor is a gentle soul. I can’t imagine what he has seen in the past 30 years. He held my hands in his with the compassion expected of a doctor. I wasn’t upset with him. He is overwhelmed by volume and responsibility. The bean counters keep him taxed to the limit. I doubt he had opened the film CD’s before I returned to New York.
Hours after I left his office, Sloan-Kettering called twice to question why I had not kept my appointment for pre-admission testing, blood tests, etc. Nobody had cancelled my surgery.
The president and C.E.O. of Sloan-Kettering is Dr. Harold Varmus. He advertises his hospital as, “The world’s oldest private institution dedicated to patient care” and eliminating the burden of disease. His doctor didn’t contact me for a month and only then, after I called him. His doctor can’t keep track of potential patients or even those waiting in reception. We now know that being the oldest means nothing. It is advertising.
Dr. Varmus would tell us that Sloan-Kettering is the best cancer hospital in America. He could be right.
Twenty-seven weeks had passed since the tumor was found. The growth was well documented as it became inoperable and migrated to the right lung. It was now 7.5 cm X 5.5 cm X 6.5 cm compared to 6.6 X 5 X 4.7 in February and 2.8 last October. Three surgeons had agreed to do the surgery and all had changed their minds. I had 4 MRI’s, a CT, a PET CT, 2 X-rays, 2 blood tests, a sniff test, a cardio-conversion, 3 EKG’s, 2 pulmonary function tests and 2 stress echocardiograms. The worst part was the waiting. Shoot me for Christ’s sake!
I remained in New York and Boston for 2 weeks. New York City sweeps you along and overflows your senses. Minute to minute you see someone less fortunate than yourself. Not the place to wallow in self-pity.
Boston has old graveyards downtown. The thin, weathered headstones of our founders are adjacent to noisy streets and high-rise buildings, a good place for a small town boy to put his life in perspective.
Our medical schools are teaching technology but are not teaching the curative properties of compassion. A doctor without compassion can be as destructive as a cancer.
Our medical system is broken. I would bet my life on it.
Robert (Bob) Swan
360-834-6376
oregonpi@msn.com
OHSU surgeons mentioned: Mithran Sukumar and Matthew Slater
Sloan-Kettering surgeon: Manjit Singh Bains
Response from Roy Magnusson, Chief Medical Officer, OHSU Hospitals and Clinics (In part): “You have distributed literally hundreds of copies of a very negative letter about OHSU and its physicians via email and in person on our campus. I request that you stop doing so. In my review of the care provided by our physicians, I can find nothing that would warrant your very personal and disparaging remarks and aggressive efforts to make them public."
To: Dr. Magnusson (Chief Medical Officer, OHSU Hospitals and Clinics):
Please advise your attorney that I am in receipt of your May 19, letter. It must be difficult to defend your surgeons, Sukumar and Slater. It detracts from your mission as a doctor. I assume that is your mission.
I wake up every day with the taste of blood in my mouth. I won't apologize for getting personal. Both of your physicians ordered tests and then ignored me. That is in the record. What was the "care" I received that you reviewed?
Your boilerplate response to patient complaints doesn't work here.
My campaign against OHSU was interrupted while I was giving away my possessions. I distributed the TLC document at OHSU again on May 18 and May 23. On May 26, a friend put another 60 copies on vehicles in your garage.
On May 23 I met with my Kaiser oncologist, a very kind man from Belarus. There is still nothing "new or novel" out there. I declined chemo because there is a 25% chance that it would help temporarily. When I offered him a copy of the TLC, he had already read it. Somebody had put it on his desk. He asked for permission to circulate it. When I told him I was on my way to OHSU to pass it out, he said, "They have to change their ways."
My next campaign will be to enlighten doctors at hospitals and clinics within 500 miles of Portland.
“Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope.” Bobby Kennedy 1966
Bob Swan
360-834-6376
On Friday, June 23 I returned a telephone call to Kathleen Haley, executive director of Oregon Board of Medical Examiners. She was scheduled to speak to OHSU residents that date and asked if she could quote from the information I had sent to her.
On 6-26-06 I received a message from an OHSU doctor, advising that OHSU was blocking my e-mail. He requested this document sent to his home.
OHSU blocking my e-mail causes me to be more aggressive in conveying this message.
On 6-28-06 I received a letter from Oregon Board of Medical Examiners. Mithran Sukumar and Matthew Slater would be investigated. The attorney general’s office would subpoena my records from OHSU.
posted by Bob Swan @ 11:51 AM
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