Tuesday, July 6, 2010


As far as I know, Ellen In Medicaland is the first book to tell the true story of what it's like to be a patient in a Harvard-teaching hospital. It is a true eye-opener and a window on our broken health system. You've got to read it to believe it!! These things actually happened to me and my mother.

In addition to Medical Care from Hell, chapters include:

Looking for A Needle In A Haystack: My hunt for a primary care physican;
Taken for a Medical Ride: My experience with a dishonest periodontist;
Mom in Medicaland: My mother's experiences in Medicaland
- You Have to Have Nerves of Steel to Go to A Neurologist
- Surgeons Are Definitely Not Fashionistas
- Every Vote Counts!
Follow The Money:My Experience with A Dishonest Gynecologist

And Many More!

I hope that you enjoy Medical Care from Hell and I welcome your comments. You can email me at e_kagan@yahoo.com

Ellen B. Kagan

Saturday, July 3, 2010


It was five years since my traumatic experience with my oncologist, Nicole Thompson, Dan Lewis, CEO of the Harvard-teaching hospital where it had taken place, and the many heartless players who had been involved. I had dealt successfully with the overwhelming despair resulting from this debacle. Moreover, I had finally received some satisfaction when I had named names in discussing my case on my radio show. Most importantly, my health was excellent and I had put my life back together.

However, occasionally it did bother me that I had never received any apologies from anyone at this institution and that no attention had been paid to my suffering there. Instead, all of the principals in this drama had gotten off scott free, facing no consequences whatsoever for their callousness and incompetency.

Then WHAM! out of the blue, a reporter at the Boston Globe filed a story that stripped away the "Mr. Nice Guy" image that Dan had crafted so carefully. Granted, this bit of information was hidden away in the back of the newspaper, but it was there nevertheless. Moreover, no one was saying what it was that Dan had done, but it was clear that he had tripped over his supreme ego one time too many, or has he put it, had a "lapse in judgment."

Therefore, the Board of Directors and the Board of Trustees could no longer deny his shenanigans or pretend that he was Mr. Integrity and an upright member of the Boston business community as they had in the past. At long last, they were forced to confront his misbehavior and take steps to discipline him.

Of course, for me this situation was validating, but, in many ways, it was too little, too late. The mental anguish that he and Nicole had put me through five years before had been very harrowing. Therefore, the fact that he had been revealed for who he was could not erase that experience or the haunting memories that went along with it. However, the negative publicity about him was a salve and it showed me once again that what goes around eventually really does come around.

Judging from the little bits of information that were filtering out from the media, it appeared that Dan was involved with a subordinate, but no one as yet knew the full details. It was clear, though, that like so many CEO's and politicians in the news lately, Dan thought that he was above the rules that applied to everyone else and that he could get away with anything. After all, wasn't he being paid more than one million dollars a year for running a hospital with a huge deficit?

It is true that Dan had done a great service for this non-profit institution by preventing its bankruptcy, improving its patient safety - although certainly not for me - and gaining accreditations that enhanced its position as a research institution, among other things. However, under Dan's watch, there were other egregious incidents besides mine which had hurt the hospital's reputation.

Like the employee who had recently embezzled more than a million dollars. Or the insurance executive who was Dan's close friend and, thus, was asked to sit on the Board. Talk about conflict of interest, but Dan's smooth talk had easily secured his friend a seat. Or the fact that every employee, except Dan, of course, had had to take a cut in pay, including the doctors, because of serious budget issues.

Then there were the hospital executives who received large salaries and other major perks, as well as stipends, for cell phones and parking during the same year that seventy employees were laid off. And the fact that this Harvard-teaching hospital is the only one in Boston and one of only fifteen in the U.S with a readmission rate worse than the national rate for heart attack, pneumonia and heart failure.

La Scandale broke out on March 15, 2010, when an anonymous letter was sent to the hospital board members, demanding action with regard to allegations about Dan. The letter was a shock to everyone because, as the Boston Herald reported, it had "colorful language and jaw-dropping metaphors and it depicted Lewis as an 'administrator whose personal issues distracted him from his fiscal duties.'"

The letter went on to state that since 2002, when Dan became CEO and three years before my clash with him, "hospital profits have plummeted" and "to cope with that reduced income, he cut pay benefits for lower wage workers, while bringing in high-paid executives to right the ship." Demanded the writer, "Where is the VP of Human Resources? Where is the General Counsel? Where is the Board of Directors? Do your job, please."

As the days went by, and more of the media were doing intense investigating, it became very apparent that Dan's relationship was a romantic one. Initially, most observers believed that this affair was only his business and his family's. However, once it was learned that he had brought it into the workplace, it became of great concern to the hospital, its employees and to the public.

According to the newspapers, Dan had met Shoshanna through the MIT Faculty/Student Advising Program. Shoshanna was 25 at the time, attractive, and determined to make a fast ascent up the corporate ladder. According to a Boston Globe columnist, she sized Dan up quickly and knew that, given his powerful position, he would be the perfect mentor for her. Thus, in a heartbeat, she approached him. At the time, Dan was 52, married and the father of two grown daughters.

According to this columnist, after enjoying a very fulfilling personal liaison, "he recruited her to work at the hospital...she worked as his special assistant and thereafter he moved her to a job as Chief of Staff and Director of Strategic Planning" for the hospital's suburban campus.

Later, because this situation became untenable, Shoshanna was forced to leave, although not without Dan's help. Through his largesse, she received a severance package of $30,000 based on a generous salary of $100,000 at the time of her exit, as well as a new position at MIT. What was especially egregious is that at the same time all the other employees at the hospital were taking a pay cut, but, again, not Dan, of course.

Even more shocking was that for many years the Board of Directors knew about Dan's relationship with Shoshanna and took no steps to stop it. Three different chairmen were advised of the circumstances and still took no action.

As explained to me by one of my colleagues, however, a hospital board is like almost all corporate boards in the United States. Most are not chosen to provide active oversight. Instead, their duties are only to fulfill statutory requirements and to rubber-stamp corporate operations. Unfortunately, board members usually have no comprehension about the latter.

According to my colleague, moreover, the chief job of the board of non-profits like this Harvard-teaching hospital is to reward financial generosity and to generate substantial pledges. Therefore, the board has a vested interest in maintaining appearances and keeping dirty laundry covered up. In short, its goal is not to rock the boat and, as a result, good governance is almost non-existent. What makes Dan's misbehavior especially hypocritical is that he has a blog where he often writes about the importance of transparency in corporations.

Afraid that the story would escalate further, Sandy King, the board chairman, called the Boston Globe and announced that the board had conducted a further inquiry and had "continued confidence" in Dan. What did that mean, though? Were they admitting the affair that was being discussed sub rosa throughout the Boston business community? Was there more to the story that had not as yet been revealed? No one was saying and speculation continued to increase. So toxic was the situation that Dan had to email an apology to hospital personnel. He said:

"Our Board recently received an anonymous letter concerning me and my actions as your CEO. The Board appropriately conducted a review of my tenure here and found an instance in which I exercised poor judgment. I agree that the Board's conclusion is accurate and I have apologized to them. I now also write to apologize to you for any discredit this brings upon our hospital and the excellent work you do."

Dan's apology did not staunch the interest in his story and soon, to exacerbate the matter, a second anonymous letter was sent. As Marianne Aiello of HealthLeaders Media wrote: "What I can't decide is why the board didn't just come out with it in the first place. Obviously, they believed the presumably salacious details would eventually come out, which is why they took preemptive measures in contacting the media. But is not spilling their guts helping anything? The hospital's internal rumor mill must be running faster than Goldman Sachs's executives wish they were from Capitol Hill."

Thus, with the media on full alert, all kinds of questions and comments were coming into the mix. Asked one Boston Globe columnist, "Isn't this abuse of power by a top executive who casts himself as a leader in the health, business and political community? If it is, why is he still a top executive?"

She went on, "How did the hospital executives justify the subordinate's position, given the hospital's well-publicized financial problems and the hundreds of millions it receives in federal money? If the inappropriate relationship between Lewis and the employee were the open secret some people describe it as , how many of Lewis's colleagues knew about it and why did they ignore it?"

Channel 5's Team 5 Investigates learned that many Board members were unhappy that Dan was still CEO. Said one source, "There are members of the Board of Directors and the Board of Trustees who, having had a day to digest the story, feel the right thing for Dan to do, in the best interest of the hospital community, would be for him to resign."

Furthermore, the source said that "many senior managers are 'very disappointed with him'". Soon, one of the members of the Board of Directors quit and a few days later, a member of the Board of Trustees resigned his post, saying, "With all the controversy, I felt it was an appropriate time to step aside."

Then, on Saturday, May 1, 2010, the Boston Herald thrust the story explosively onto its cover, with a full-page picture of Dan and his zippered lip. The headline read NO MORE MR. TRANSPARENCY. Apparently, the newspaper's top health reporter had followed Dan to Ohio, where he was speaking at a conference. Angered by her presence, Dan tried to keep her outside and urged his audience not to speak to her.

As she stated, he "even snapped a photograph" of her with his cell phone..."so he could make sure conference organizers knew whom to bar from the event." Fortunately, she was able to procure an audiotape of the event. Ironically, one of Dan's comments during this speech was , "If you make a mistake, instead of pointing fingers, take responsibility." Said one attendee, "He talked a lot about accountability."

On Monday, May 4, 2010, board chairman Sandy King announced after another fraught board meeting that the group had fined Dan $50,000 because his actions had "created an improper appearance and became a distraction within the hospital." However, as reported in the Herald, hospital employees, whose wages and benefits were cut, were demanding to know when the directors learned of Dan's workplace romance and if they knew that the woman had received severance pay when leaving the "cash-strapped" hospital.

On that same day, the Herald came out with another front page picture of Dan, with the headline WHITEWASH. In smaller type, it read, LEWIS'S TRANSPARENCY TAKES ANOTHER HIT AS HE BLAMES UNION FOR MEDIA SCRUTINY. So much for taking responsibility for your own actions. Moreover, the Massachusetts director for the National Organization for Women called the $50,000 fine "a slap on the wrist." She continued, "We are a little concerned that there are not more serious ramifications."

Everyone was now talking about Dan Lewis and his escapade and even more columnists started to come out of the woodwork. In the Boston Globe, one called for a fuller accounting of Dan's actions. He wrote:

"A few fragments of information have emerged. It's clear that Lewis engaged in a relationship with a subordinate, which is not in violation of hospital rules. It's clear that the subordinate at one point worked directly for Lewis and was then transferred to a management position. It's clear that the subordinate left the hospital with a severance package."

However, the columnist asked, "How sizable was the severance package? Why did she leave the hospital? Why was she hired? Was she qualified for the new management position? What role did Lewis play?"

On May 14, 2010, both the Boston Herald and the Boston Globe announced that the Attorney General of Massachusetts would investigate Dan Lewis. Sandy King had asked her because the "Board believes that it would be prudent to seek an independent review of its actions." Thus, the taxpayers of Massachusetts were now burdened with paying for Lewis's arrogant and narcissistic behavior. Didn't the board have any sense of responsibility? Weren't they capable of doing the proper thing by firing Dan, without cost to the state?

To try to win over the media, Dan called in a few reporters and even made a television appearance. During these interviews, he revealed that his senior staff and hospital board members "warned him for years about the pitfalls of his longtime close relationship with a female employee, but, for reasons he does not fully understand, he ignored their advice."

As reported, "he declined to detail the exact nature of the relationship with the woman, which began before Lewis hired her in 2002, but said he was very sorry for his poor judgment and hoped to win back the trust of employees and patients." Apparently, Dan believes that he can continue to maintain his posture of innocence and that his charm will get him successfully through this mess.

Even with all eyes glued to his every move, Dan plans to remain CEO. "I really love the place," he told a reporter, "and am very attached to the people here and hope that I can continue to do work here." And, of course, the money is not bad either.

In any event, on September 2, 2010, right before Labor Day, the Boston Globe came out with the front page story that the Attorney General had reached a decision. In her view, the article stated, the Board of the hospital should "do some soul searching" about Lewis's "ability to continue leading the hospital" because she believed that his personal relationship with his subordinate "clearly endangered the reputation of the institution and its management." However, Sandy King, the Board Chairman, "rejected any suggestion that Lewis's actions may make him unfit for the job". Rather, he stated, "the best thing for the hospital is to have Lewis lead the institution."

Immediately the National Organization for Women and SEIU 1199 came out against the hospital Board's stance. Said NOW in a joint statement with SEIU, "Lewis's behavior is unacceptable, inexcusable and endangered the hospital's mission and reputation." Moreover, a week later NOW demanded that the Board fire Lewis because of his "controversial relationship with a former female subordinate." Said Christina Knowles, Massachusetts Director of NOW, "A slap on the wrist is highly inadequate and being terminated is the most appropriate action. Anything less is unacceptable."

Showing that they were serious about their demands, NOW and SEIU 1199 protested outside the Four Seasons Hotel in Boston where Lewis and the hospital Board were holding a meeting. They picketed there for hours, demanding the termination of Lewis.

However, Dan is still in place as CEO and he continues to receive a huge paycheck. As a Boston Globe columnist wrote in late September, "The 'Mad Men' way of treating women is alive and well in Boston" and there is no accountability for CEO's who are part of the old boy network.

If by some chance Dan is let go - and at this point, it seems very unlikely - he will be able to retire handsomely to some plush watering hole. Of course, even though he still remains CEO, he will never again be Boston's fair-haired boy, a reputation that he has enjoyed for years. And maybe, just maybe, that is punishment enough. In any event, the saga of Dan Lewis and this Harvard-teaching hospital is to be continued.

JANUARY 7, 2011

BIG NEWS and totally unexpected: Dan resigned!! It is not known where he will go or what he will do, but Dan is gone from this Harvard-teaching hospital. Now it is possible, if the powers that be choose a person with honesty, integrity, competency, and a big heart, that this once-great institution will become the place that was respected around the world.


In the short term, I concentrated on putting my life back together, professionally and personally. With regard to the former, I went back to my health reform work and I began to produce and host a radio show. It was a call-in program and immediately took off, becoming very popular. There were so many people who had had horrible experiences like mine and they were grateful for a place in which to vent.

At the station I met Gregory Lewis, a lawyer who hosted a legal series, which aired after mine. Very genial and knowledgeable about the law, he and I became friendly. After awhile I felt comfortable enough to tell him my story and to get his thoughts on the matter. Incensed that the hospital and Nicole did not have to face any repercussions from its mismanagement of my case, he told me that I could get satisfaction and he was willing to help me.

Greg advised me that the most powerful way to make my voice heard was to do a program on my case, revealing the names of the people involved. I was very surprised because I thought that such a show would be subject to libel. However, Greg told me that since I was telling the truth, there was no danger of that. Before I went this route, though, he wanted me to invite Nicole to a meeting, which dismayed me because I did not want to see or talk with her. Greg said that this letter was pro forma and not to worry, that Nicole would not want to talk with me either.

Thus, with his help, I composed a letter, which stated: "On the advice of my attorney, I have decided that I would like to meet with you to discuss the events and communications with you and your subordinates that occurred while I was in your care..."

"It is my belief that such a meeting would be mutually beneficial since it would consist of a discussion of how these events relate to my health, your career, and any possible subsequent litigation..."

Very soon I received a reply from her attorney. Among other things, he said, "As you know, the Board of Registration complaint was closed in favor of N and your medical malpractice claim was denied on behalf of N...I am writing in response to your...email to N, in which you requested to meet with N...Under the circumstances, we respectfully decline your invitation for a meeting."

Happy at this turn of events, I asked Greg what to do next. I also mentioned that her lawyer was making a misstatement. In fact, the Board had not dismissed my complaint; rather, it had set up a file on Nicole.

Greg advised me to now ask the risk management company for a copy of the report related to the evaluation of my claim. After I sent my request to Pauline Hogan, she wrote: "Please be informed that I cannot provide you with this material, since the investigation, including the expert review process, was performed at the direction of legal counsel, in relation to potential litigation...Accordingly, the information you have requested is privileged from disclosure and, therefore, I am unable to accommodate your request."

As Greg and I agreed, our inability to access these records hindered us in a possible legal action. Thus, he wanted to find out from Pauline which Massachusetts law covered this stance. However, in the end, we decided not to press that point and, instead, to concentrate on my show.
It was now our goal to give the maximum aggravation to Dan, Berlin, Amy and Nicole. The first step was to send each one the same information: "This...is to inform you...that my radio show...will be covering the topic 'When A Patient Is Victimized By The Health System'. This subject will air in...and will discuss my experience with N when I was under her care...I shall be talking about my experience in detail, naming all the people involved."

"All of you know what happened and now it is time for the people in my audience, who are throughout Massachusetts, to know what can happen when they have the misfortune to deal with a doctor and an institution that lack competency, decency and humanity."

In response, Dan wrote: "Thank you for your courtesy in letting us know."

I have to tell you that doing that show was such a catharsis for me. Not only was I able to speak publicly about the horrible things that had happened to me at this Harvard-teaching hospital, but I was also able to help others to handle the health system. And, there is nothing so energizing as speaking truth to power. It frees you and helps you to take back your dignity as a human being, which the medical establishment had tried to deny me.

The response was overwhelming. People stopped me in the street, aghast at these events and giving me great support. Moreover, they wanted more information about this institution, which I happily gave them. Most importantly, I was able to demonstrate from first-hand experience that a Harvard-teaching hospital does not guarantee patient safety. To further publicize my story, I put the show on my website and got many more responses from that. In the end, after all my suffering, I felt validated and was no longer consumed by the horror that I had experienced.

So, what is the lesson? First, as you can see, there were many wonderful doctors and nurses who helped me during this time: Frank, Sam, Al and Sherry, to name a few. There are many others like them, trying to do the best for their patients, with compassion and decency.

However, if you have one rotten doctor, you can be dead. So, as I write in the Introduction, you must keep your eyes wide open in dealing with your physicians and other medical people with whom you come into contact. By being aware that there are good and bad people in every profession, including medicine, you will be able to protect yourself and get the good health care that is your right.

I hope that you will never have to deal with a doctor as terrible as Nicole. However, if you are so unfortunate, move on as quickly as you can. You have only one life and a physician like her can ruin you forever.

Another important lesson: If Nicole, Dan, Dr. Berlin and Amy had apologized to me, I would have been satisfied. Moreover, by treating me with honesty and respect, they would have strengthened our relationship and I never would have considered a lawsuit.

Instead, they tried to put a spin on the facts, twisting them to suit their need of protecting Nicole. As a result, they aggravated the situation needlessly because, from the beginning, I had made it clear to them that I was dealing in good faith, wanting only to work with them to make sure patient safety improved at the hospital.

Finally, what is so ironic is that during this time, the Boston Globe ran a column on the editorial pages entitled, "When Doctors Say They're Sorry", written by Doug Wojcieszak, a spokesman for Sorry Works! Coalition. He said: "Recent news stories report that Harvard Medical School's major teaching hospitals are actually encouraging their doctors to apologize for medical errors."

If only my hospital had adhered to this philosophy, so much heartache could have been prevented and it never would have become an example for me and my audience of bad medicine.


Thursday, July 1, 2010


Then one day in February, six months after all the terrible events and one month after I had met with Dr. Berlin and Amy Brown, I was browsing in Barnes and Noble Bookstore. Idly I picked up the current issue of Boston Magazine, which had a cover picture of an actress in medical scrubs. The magazine itself contained a list of the best physicians in Boston.

I started to leaf through and there, in one heart-stopping moment, I saw a headshot of Nicole, lined up with twenty-four other physicians. I could not believe my eyes and had to keep checking out her picture to make certain that I was seeing correctly. When I had finally absorbed the fact that it was indeed Nicole who was being accorded the 'best" honor in oncology, I became completely enraged and I felt totally betrayed by the hospital.

As I read further, I found out that this list had been compiled by two Harvard-affiliated doctors, with no input from patients. Moreover, I was certain that Dan or Dr. Berlin or someone else at the hospital had submitted Nicole's name. Talk about a biased list of the best, I thought.

Said one of the listmakers, "The hardest part is narrowing it down, especially in Boston." Well, I thought, you certainly can cut your list by one! The article was headlined: "...with more than 250 doctors in 30 fields, all of whom are accepting patients, we bet you'll find someone here who can make it better. You're in good hands!"

My anger knew no bounds. How could Dr. Berlin and Amy, just a few weeks before, look me straight in the eye and tell me that Nicole had been disciplined by the Peer Review Committee when they had to have known about this article? Didn't they realize that I would see it and find out that they had lied to me? Were they so arrogant that they just did not care at all?

Finally, it was blatantly obvious to me that these medical people - Dan, Dr. Berlin, Amy, the Peer Review Committee, as well as many others who had been involved in my case, believed that they could do and say whatever they wanted to a patient because they were accountable to no one.

What a phony, hypocritical group at that Harvard-teaching hospital, I raged to myself. There has to be something that I can do to make them take the consequences for their egregious behavior. And so, I left the bookstore, more determined than ever, to let people know about the risks you take every time you enter Medicaland.

Before I took further steps, I talked to many of my friends and family. Everyone now agreed that I had been betrayed and it was time to take action. But what to do? Then it became clear to me: I had to instigate a lawsuit. Nothing else was going to get the attention of Dan and his cohorts. And, so, I decided to find a good medical malpractice attorney.

First I was recommended to James Whitaker, very well-known in this specialty. We chatted for some time on the phone and then he asked, "Ellen, do you feel ok now?" I said that physically I was in good health, but that emotionally, I was overwrought, afraid that my cancer would return. I told him that I thought this reaction was a direct result of the mental pain and suffering that Nicole had caused me.

James then informed me that I did not have a case because I was physically well. I learned from him that medical malpractice does not include mental anguish, only physical harm. Moreover, a patient has to be in very bad shape for a lawyer to take on his or her case. In essence, what he was saying to me was that only if you are maimed or close to death or dead can you get a court hearing.

Shocked, I decided to check with other attorneys to make certain that James had been correct. Thus, I called three other experts in medical malpractice and they told me the same thing. So, it was true after all: the medical establishment can hurt you horribly, but it is almost impossible to bring a winnable case against it. I was astounded and did not know what to do next.

Then I met Roberta Wilderstein, another lawyer who specialized in medical malpractice. She advised me that I did not have to sue to get satisfaction. Instead, she told me to bring my case before Nicole's risk management company. It would take into account all the particulars, and, perhaps, award me a financial settlement. This action would send the right signals to the hospital, she said.

In response to her suggestion, I said that I found it hard to believe that Nicole's risk management company would take my side since, if it did, it would have to pay me a substantial amount of money. However, Roberta insisted that it was not uncommon for these companies to make such cash payments.

Before going this route, though, I decided to register a complaint with the Mass. Board of Registration in Medicine. It seemed to me that my top priority was to make my case public so that Nicole's patients, as well as those who were indecisive about using her, would have the necessary information with which to intelligently evaluate her.

Therefore, I got in touch with Janice Black, the Consumer Protection Coordinator. She sent me a form to complete, which included sixteen possible reasons for my complaint. I checked off "Substandard Medical Care". Then I sent her the same acount that I had written for the hospital. I knew that this process would take a long time, but I felt good that I had started it.

Next I contacted Pauline Hogan, the General Claims Adjuster of Nicole's risk management company. She sent me a HIPAA form for me to execute for her. She told me that once she received it, she would obtain the necessary records from the hospital to "evaluate the matter." She would also "obtain independent expert reviews to assist our evaluation of this case."

When I realized that this decision would be based on hospital records and doctor input, I was skeptical that it would be in my favor. As I saw it, the medical establishment at the hospital had closed ranks around Nicole and its information would protect her.

I also forwarded a complaint against Nicole to the Joint Commission on Accreditation of Healthcare Organizations. I knew from its responding letter that it would do very little to discipline Nicole, but I believed that it was important that all the proper disciplinary groups be aware of my case.

In any event, the Commission wrote: "The JC gives serious consideration to all issues that may reflect noncompliance with JC standards...We have updated our databases for this organization to reflect your concerns. We will continue to monitor the organization for patterns of care over time in the area of your concerns." In layman's terms, the JC was going to do nothing, but at least it had a record in its files.

It took months before I heard from the Mass. Board or the risk management company. Finally, in about eight weeks, I received a response from the Mass. Board of Registration in Medicine. It included a copy of Nicole's answer to my complaint. This document stunned me because it contained at least thirteen falsehoods about me.

It was incredible to me that a person who had taken the Hippocratic Oath could be such a liar and a fraud. Therefore, I called Janice at the Board and told her of my dismay. She said that she was glad that I had gotten in touch with her because the Board was ready to review my case. However, it would wait until I sent them a rebuttal, which I wrote immediately.

In this document, I said, "I want to make the reason for this complaint clear to the Board. As a person who survived cancer, I know first-hand the importance of competency, kindness and compassion in one's oncologist. In my case, I experienced a grave psychological trauma at my oncologist's hands and I want to prevent this terrible situation from ever happening again to another patient and another patient's family." I then took apart Nicole's responses to my complaint, showing that her statements were lies.

So, now I waited and waited for the Board's decision. I knew that there were three ways that they could go: they could dismiss the case; they could set up a file on Nicole; or they could recommend the "initiation of formal disciplinary action."

Finally, I received their answer and I was very disappointed. They wrote: "After a thorough review of this evidence, the Committee has determined that the complaint and the physician's response should be placed in the permanent record of the physician."

After everything that I had gone through with her, I was hoping that the Board, at the very leasrt, would monitor Nicole's behavior. In my view, it was good that it had set up a record on her, but this measure would have little effect on her practice of medicine. Thus, once again I learned that it is extremely difficult to go up against the medical establishment.

Now I held out hope that the risk management company would do the right thing. Even though I had always been doubtful that it would penalize Nicole, until I got its answer I thought there was a chance for me.

At last I received a letter. It said: "We have completed our evaluation of the claim you presented...Through our expert review process, it has been determined that all of the care provided to you by N and all members of the health care staff...was within the Standard of Care. Therefore, we will not be extending a settlement offer to you."

I felt as if I had been punched in the stomach. How could this organization have the unmitigated gall to tell me that Nicole and her colleagues had acted within the "Standard of Care"? As I said to a friend, "If she, who could have killed me with her words, is providing good health care, then I shudder to think what bad health care is!" Obviously, there was no Standard of Care in medicine. So long as a doctor does not maim or kill you, then he or she is practicing "good medicine" and I sunk into a deep depression, feeling very lost and alone.

I was still not prepared to give up the fight, but there did not seem to be anyone powerful enough in my corner. Of course, I was later to learn that that was not true, but it took me about seven months to regroup and to link up with someone who could help me. Only then was I finally able to show Nicole and her cohorts that I was not going away; that I was lurking in the background; and even though there would be no lawsuit or a financial settlement, I was determined to make them uncomfortable for what they had done to me.



After much deliberation, I decided it was now time to write a long letter to the medical powers at this teaching hospital. To find their names, I obtained the hospital's annual report and ascertained that it included the Medical Executive Committee and the Board of Directors, as well as the Overseers. I did not think it was necessary to send my report to everyone - just a select few who would probably discuss it with their colleagues. I chose fifteen at random and then began to hammer out my document.

This process took me many hours as I wanted to present my case clearly and concisely. It was also important to me that this group understand that I cared about their hospital, as I knew they did, too, and that it was only my intent to help them prevent such a terrible situation from happening again. Then I explained my background, including my extensive involvement in health reform. In fact, because I knew many on the Board of Directors from this work, I had credibility with a number of people there.

My document also included a summary of the incident; my health background; and a conclusion, where I wrote: "As I am certain that you know, the first rule of medicine is to 'do no harm'. That rule was broken in my case and my family and I suffered unnecessary mental anguish, which has not completely disappeared for any of us. Therefore, it is very important to me that you and all the people who receive this report will take action to make certain that such a situation does not arise again. The hospital is a fine institution and I would hate to discover that it has become second rate because of carelessness and lack of humanity."

I mailed this report and waited for a response. There was only one email and that was from Ralph, an Overseer. He had known me for a long time - we had worked together in many health reform organizations. On his subject line of the email, he had written: "My God!" and then in the body, he said: "That is the most horrendous story. The most important thing, of course is that you are OK." Then he asked me if he could share my story with "folks who might actually care...(Do) Something to the structure or whatever so it won't happen again" and "Can I use your name or should I not do so?" Of course, I agreed to his revealing my name, but, in any event, I never heard from Ralph again.

I also received a letter from Dr. Max Stein, Chief of Medicine, who, as Dan had explained at our lunch, was the real power in these instances. It was only he who could take action against Nicole through the Peer Review Committee and not Dan, who was in charge of Administration. The problem with this Committee, though, is that its actions are confidential and not available to the public. Thus, a patient can never know how a doctor has been disciplined, if at all.

And so, as the summer turned into fall, and then into winter, I waited and waited to hear something from the hospital. There still had been no response from the Peer Review Committee when in January, a full five months after the incident, Dr. Michael Berlin, Director of Quality Control in the Department of Medicine, requested a meeting through Amy Brown, a social worker in his department,who would also be present. After so much runaround, I did not believe that anything would be accomplished by talking to either of them, but I was curious to hear what they had to say. Thus, I dressed in my professional attire and headed down to his office.

Arriving early, I ran into Dr. Berlin in the hall. A small, seemingly distracted man, he looked as if he had not slept in one hundred years and he was white in every way - his hair, his pale skin, and his white coat. He wasn't ready to talk with me and so he sent me to a conference room to await him and Amy.

When I got there, food was being cleared away from the previous meeting. Thus, I was able to grab myself some lunch from what was left. After all, I thought, who knew what line Berlin and Amy would take with me. I might as well fortify myself with their food - a brilliant notion as it turned out because the leftovers were delicious and the meeting was indeed confrontational.

In a few minutes, Dr. Berlin and Amy joined me. She was in stark contrast to him, Jeff to his Mutt. Amy was about six feet tall and as wide, decked out in a giant muumuu. She sat opposite me, with the doctor to my right, at the head of the table.

"You know, Ellen," she said sanctimoniously. "I have great faith in Nicole. Many times when doctors are confronted with their mistakes, they deny them and I worry that they will continue to hurt their patients. But Nicole understands the mistakes she made with you and has truly considered all this as a learning experience. So, I know that this will never happen again."

There is was once more, I thought. Like Dan, Amy considered me a "learning experience," never mind that Nicole's poor judgment could have killed me. Angered by her condescension, I replied, "Well, it's lovely that you have so much confidence in her, Amy. But Nicole almost destroyed me with her words. If she continues in this way, then she will really lose a patient and the hospital will have a lawsuit on its hands!"

Agitated, Dr. Berlin piped up, "Ellen, you don't understand how upset Nicole was when she thought you were going to die! It was a horrible time for her!" Did my ears deceive me? Was Dr. Berlin really defending Nicole, the woman who had terrorized me needlessly? Did he really believe that her suffering was more important than mine?

Apparently his ego was so inflated that he actually thought that I would buy into his twisted and narcissistic argument, that I would agree with him that Nicole had been the victim in this debacle and not I. After all, what could it mean to me that I might be losing my life? That was just a blip on my screen. But Nicole's being upset - now that was what really mattered.

Obviously, it would be easier for all of them - Dan, Berlin, Nicole and Amy - if I accepted their "learning experience" excuse. Then they could all continue as before and everything would be wonderful in Medicaland.

Outraged by his insensitivity and lack of compassion for me, I jumped up from my seat and declared, "Look at me, Dr. Berlin. Do I look dead to you? According to Nicole, I should be! And," I continued, "is the Peer Review Committee going to monitor her to see that she does not do this again?"

"Well," he answered. "The Peer Review Committee met with about twenty-five doctors in attendance and everyone felt terrible. They had her boss and Dan meet with her and she knows that she did wrong and will never do it again. Plus, we've taken the necessary steps to discipline her. Doesn't that make you feel good? Of course, we can't tell you how she is being disciplined as that is confidential."

How convenient for doctors, I thought, that the Peer Review Committee meets without patient input! It was incredible to me that Dr. Berlin and Amy believed that I would be satisfied with this meaningless procedure, which, I was convinced, had no effect on Nicole's career as a physician.

Therefore, I declared, "This meeting is concluded as far as I am concerned. It doesn't matter if a patient is treated badly. You doctors just circle the wagons and protect your own. It's the foxes watching the henhouse. So, I shall just call it a day." With that I walked out, leaving them aghast. It was incredible to them that they had lost control of the discussion with me, a mere patient.

When I arrived home, I was in total despair. It had been so hard to keep up my spirits when I was undergoing chemotherapy and radiation. Fighting cancer requires 100% of your focus and I had never let my guard down during this period, not even once. Yet now it seemed as if I was facing a situation that was harder to bear, if that was possible - the cruelty of the medical establishment.

How could doctors harm me so terribly and yet try to cast me as the villain? After all that I had suffered since I had been diagnosed with cancer, their lack of humanity and lack of compassion almost destroyed me and, for the first time since I had learned I had cancer, I just fell apart and cried and cried.

After awhile I regained my composure, but I did not know how to proceed. I just felt stalemated and worn out from the whole situation. I talked a lot to friends and family. Many were of the opinion that, since it was finished, I should just move on and forget about the experience. Moreover, they reasoned, I had tried to get justice,but I was only one person. What could I alone possibly achieve? It was now time, they said, to just live my life.

I have to admit that at that point I agreed with them. After all that I had been through, I just wanted to get out and have a few laughs. Hadn't I earned them? Hadn't I been through too many sad times? Therefore, I decided to try to forget this ordeal and to re-enter the land of the living.



The first thing that I decided to do was to get in touch with Dan. Thus, I emailed him and asked for a meeting. His reply was pleasant but I thought somewhat patronizing. He wrote: "I hope you are feeling better and letting life get back to normal. Dr. S. did talk with N and I am quite confident that she understood the ramifications of what occurred so I am not sure that needs follow up. Did you have something in mind?"

His reply absolutely floored me. How could Dan have Dr. Segel speak to Nicole when Dr. Segel had no authority over her? And how dare Dan act as if my horror story were an ordinary event, something that could easily be brushed off?

It was clear to me that Nicole had received just a slap on the wrist for her inexcusable behavior. More egregious, though, was that she and Phyllis were continuing to practice as if they were innocent of any wrongdoing and could harm someone else again.

Therefore, I sent him another email stating that, in my opinion, Dr. Segel's talking with Nicole was not enough disciplinary action, considering the fright that she had caused me and my family. Moreover, I wanted to know how he was going to prevent such a misdiagnosis and the resulting misery from every happening again. Finally, I told him that I had never received an apology from Nicole or the hospital and I was surprised.

Dan answered immediately and set up a luncheon engagement, but I fully understood from his emails that he would only be going through the motions. It was good politics for him to hear what I had to say, but he was certainly not going to do anything to rock his boat. After all, Dan was earning almost $1 million a year. Why would he want to challenge his position at the hospital?

Understanding his motives, I still wanted to talk with Dan. I believed that I should make my case to everyone in power at the hospital, beginning with its President, so that the situation could be handled with as much discretion as possible.

Also, I was dealing in good faith. At this point, I truly believed that Dan and his colleagues wanted to do right by their patients and would make certain that Nicole could never harm a patient like me again. As I found out, I had a lot to learn about hospital politics and the medical establishment, but I was determined to give it every chance to act decently.

The day before our lunch, I reviewed what I was going to say to Dan very carefully. It was important to me that I make my presentation clearly and without emotion. Moreover, I did not want to engage in any fingerpointing. Instead, I wanted to give Dan every chance to express his viewpoint and to let him know that I wanted to work with him to ensure that there would never again be horror stories like mine at this Harvard institution.

I hardly slept the night before our meeting. If nerves could have killed me, I would have been dead on the spot. But I was determined to bring my case out in the open and so I tried to calm myself down, facing my fears head on. In the end, I knew that the hell that I had experienced as a patient had been much worse than what could take place at lunch. Thus, I set out from the Cape to Boston, knowing that what I was doing was right and necessary.

I picked Dan up at the front door of the hospital. He got into my Ford Taurus and I thanked him immediately for his time. Smiling at me, he put his arm around my shoulder and said, flirtatiously, "Anything for you, Ellen."

Right then I knew that I would get nowhere with him. Clearly, he was relying on what he thought was his enormous charm - and what I perceived as his oiliness - to make me forget everything that had happened to me at his hospital. However, I still wanted to give him a chance to prove me wrong about his motives and so I stuck to my carefully prepared plan of action.

As we drove to the restaurant, Dan talked non-stop about his work-outs, his late mother, and why he was so happy to see me. Chattering on and on, he would not let me get a word in edgewise. It seemed to me that Dan was exceedingly nervous and, therefore, I calmed down, certain that he knew that I had a very good case to make.

Finally, we reached our destination and once we were seated, Dan became serious, with no evidence of his ubiquitous charm. "So, Ellen, what can I do for you?" he asked. Looking him straight in the eye, with no hint of a smile, I answered, "Dan, I think you should fire Nicole and Phyllis right away before they hurt any more of your patients."

Startled, he cried, "But, Ellen, I can't fire them, especially Nicole. She has helped hundreds of people, hundreds and hundreds of them." "Well, she almost killed me with her words, Dan," I replied. "Next time she'll definitely kill someone in your hospital and then you'll have a lawsuit on your hands."

And I continued: "You know, Dan, Nicole messed up in so many ways that it is unbelievable. She told me that I was going to die, without even a biopsy, something that totally unnerved me and my family. Plus, she made this situation even worse by having her nurse practitioner giving me this news on the phone.

And, then, to add insult to injury, she broke the HIPAA Law when she called my sister. Of course, the cherry on the sundae of all of this is that your hospital ER put me in the same room and bed in which my mother died 20 months ago. If you can't fire Nicole and Phyllis, Dan, you should at least be monitoring them. Is that possible?"

I sat there waiting for his reaction, hoping against hope that he agreed with my assessment. In my view, if he was not ready to stand up to Nicole and Phyllis, then they would be able to continue to do grievous harm to their patients.

When Dan did not respond, I declared, "If you aren't prepared to do something about this situation, Dan, I'll have to file a complaint with the Mass. Board of Registration in Medicine. I just cannot let this go."

With that he seemed to come alive and he started to explain the chain of command at the hospital. He told me that he had no responsibility for the doctors, that only the Chief of each department had authority over his or her group.

Next up the ladder was the Peer Review Committee, followed by the Medical Executive Committee, with the Chief of Medicine the most powerful of all. Finally, Dan explained that Nicole and other physicians in similar positions were not paid by the hospital. Rather, they were members of a private physicians group, which was responsible for their salaries.

When he was finished, he surprised me by saying, "I'll tell you what, Ellen. I'll introduce you to Nicole's Department Chief, Lyle Simpson. I think you should tell him what happened to you and maybe he can do something for you." Warmed by Dan's suggestion and relieved that he seemed to be the decent person that I had always judged him to be, I thanked him and told him that I would await Dr. Simpson's call.

The next day, confident that positive results had come from the lunch, I emailed Dan a thank-you. Therefore, I was stunned when I received his response. It was a total reversal of his position at our lunch and could not have been colder and more uncaring. He told me that "...the more I thought about our lunch, the more I became dissatisfied at the conversation we had...I cannot agree with your conclusion that N needs further disciplining or time away from her patients."

"She was deeply upset that she might have caused you any discomfort or anxiety and she has learned something important from the experience . I personally expect no more from one of our physicians...I have reconsidered what I told you I would do in that I will not pursue further meetings with...Dr. S on this matter. You have indicated that you will be bringing a complaint with the state regulators. I will let that process proceed..."

So, my instincts about Dan were correct after all, I thought to myself. He never intended to help me and to involve himself in this matter. Instead, I was now sure that he was hoping to discourage me from bringing my case forward. He had probably talked to the hospital lawyers, too, and was afraid of the ramifications if he referred me to Lyle.

What was appallilng to me was Dan's total lack of compassion and his utter disregard for my welfare. What did it matter to him that Nicole had told me that I was dying, even though I was perfectly healthy? How could it possibly concern him that the ER had sent me to the same bed and room in which my mother had died twenty months before, even though I had told the ER nurse the reasons for my not wanting to go?

To Dan, whose heart was clearly an iceberg, these incidents were only minor "discomforts". Why on earth would they send me into a tailspin, for heaven's sake? As I saw it only Nicole's "learning something important" from my case was of interest to him and that she was a better physician for it. Of course, it was of no consequence to him that this newfound expertise of hers came at a devastating expense to me, her patient.

Most importantly, it seemed to me, in Dan's view, as a patient, I was a second class citizen in the doctor-patient relationship. To him, how could I, given my inferior position in this equation, presume to confront him and question white coat authority? Given this twisted logic, wasn't it Nicole who was the victim and not I? It was completely irrelevant to him that Nicole's diagnosis, based only on her guess and not on any scientific data, had turned my life upside down, leaving me with terrible psychological trauma.

Because of Dan's effrontery and arrogance, I no longer had any hesitation in going on with my case. He had me all fired up and ready to go. There was no way that I would allow him to bury what had happened to me. If I let him ignore me, then this incident would fester inside me and I would never put it to rest. Only by publicizing this horror story and, thereby helping others, would I ever come to terms with it. And, so my long odyssey of spreading the word began.



Finally I was out of that operating area and downstairs on Franklin 3, feeling as if I had just returned from hell. Therefore, when I got to my room, I decided that, to preserve my sanity, I had to leave the hospital the next morning. There was no way that I was going to stay in a place that seemed determined to destroy me, one way or another. I didn't even care if I dropped dead right outside the front door. At least in the outside world, where I would see no doctors, I had a chance of surviving. And, if they wanted to take out the remaining fluid, well, then, they could do it on an outpatient basis, like the first time.

The following day, before I could announce my plans, Dr. Segel came to see me. Immediately I told him that I was going home, that I could no longer put myself in the hands of medical people who did not seem to know what they were doing

Straightening up to his full 5'4" height, he thundered, "Young Lady, you will calm down and remain here so that we can take the fluid out of your body! You are very emotional!" Furious, I replied, "Well, Doctor, if it had been your wife who was treated this way, you'd be running up and down the halls. You'd be screaming your head off, looking for a competent person, if indeed there is one in this hospital!"

Taken aback by my response - and probably incredulous that anyone would question his white coat authority - he softened and answered, "Ellen, I'm just trying to get you good health care." "Well, it's about time!" I answered, somewhat mollified.

Since it appeared that he was working hard now to help me and thought it was best for me to remain overnight, I decided to stay. Then he told me that Dr. Watkins, the physician who was the expert in this specialty, was waiting for me. Thus, again I lay on a gurney and was brought to another building for yet another procedure.

Believe me, I still did not think all would be well. I mean, Dr. Segel had bungled my visit to him at the start of this case. How much hope could I have that he was now on the right track? However, I knew that the fluid had to be removed and so I went along with his recommendation.
Dr. Watkins was a very pleasant, informal guy, and he relaxed me by telling me that there was nothing difficult in removing the fluid. He also told me that there would be more testing. However, since all the other lab results had been perfect so far, he did not see why this specimen would be different. It was such a relief to deal with a doctor who appeared knowledgeable. Therefore, I started to believe that maybe, just maybe, I would live after all.

That afternoon, while I was recuperating, Stephanie Lamson, Director of Patient Services, came to see me. I had met her while my mother was in the hospital and we had gotten better acquainted through my health reform work. A small, nervous woman, she sat herself near me and told me that she had heard from Dan that there had been problems with my recent health care.

Her concern for me and the fact that Dan had told her my story, cheered me and gave me the hope that they took my case seriously. Maybe, I thought, I had misjudged Dan. Perhaps he was upset that I had such a horrible experience and he, in fact, was trying to make certain that no other patient would ever face a similar trauma.

Therefore, I laid out the facts. I also told Stephanie that I had no intention of filing a lawsuit because I had great affection for the hospital, where my family and I, prior to this incident, had been treated very well. Moreover, I told her that I wanted to work with her and everyone else involved to ensure that, in the future, there would be better communication between doctors and patients.

Stephanie listened carefully to me and seemed aghast at Nicole's incompetence in my case. She also told me that she agreed with everything that I suggested to improve the doctor-patient relationship in the hospital.

Thus, I began to believe, very naively, as it turned out, that she, Dan, and everyone overseeing patient safety, would make certain that Nicole was disciplined. And, so, for the first time since this horror began, I felt vindicated, somewhat assured that no one else would be harmed like me.

However, my sense of peace did not last long because my karma erupted again. While I was relaxing in my room, Richard, one of the nurses, stopped by to see me. Even though he was not on my case, he and I had had some enjoyable conversations during the week-end and I thought he had stopped by to have a friendly chat.

How mistaken could I be? Instead, he looked at me with a very squirrelly gaze and said,
"You know, Ellen, your lips are blue. There may be something seriously wrong with you!" Totally unnerved, I immediately jumped out of bed and ran to Grace my nurse. When I told her what he had said to me, she was livid. "You look fine, Ellen," she said angrily. "I'll keep Richard away from you!"

What kind of place had this become? I thought. Have the inmates taken over the asylum? Why would a nurse try to frighten a patient? It was all too much to absorb and I prayed that I would get home in one piece.

As I was getting ready to make my longed-for exit the next morning, Frank,my cardiologist, came for one last visit. It was such a relief to see him, this kind and caring man, who, I knew was a favorite of the hospital staff and his patients. And, being the decent person that he was, he apologized for the confusion surrounding the removal of my heart fluid.

As we were talking, Dr. Segel phoned. He said that he hoped that the last of my fluid tests would be ok, but since he was going on vacation right away, he would not be able to report the results to me. I was stunned because he had to know that I would be very anxious until I had a definitive answer. He did not even recommend someone who could give me this information, even though it was his responsibility.

Since he had been arrogant, as well as negligent, toward me from the beginning of this case, I shouldn't have been surprised that he was so cold and uncaring. However, it still unnerved me because, by virtue of their profession, it has always seemed to me that doctors should be warm and sympathetic people. Of course, working with Nicole on this case ought to have disabused me of that idea. Then, Dr. Segel added insult to injury when he declared, "You know, Ellen, even though it looks so far as if you are cancer free, there's a 50-50 chance that it will come back!"

This statement simply took my breath away. Was there no end to Dr. Segel's cruelty? Had he lost all of his humanity? Did he really not comprehend that this remark would scare the hell out of me?

Because Frank was with me, I did not answer Dr. Segel in the way that would have satisfied me. What I wanted to say was, "Dr. Segel, have you had your prostate exam yet? If not, you have a 50-50 chance of having cancer, you know." However, I quickly ended our conversation, understanding that this man was a hostile stranger to me and that I had to replace him as soon as possible.

Fortunately, I knew that once again I could turn to Sam, my surgeon, to obtain these results. Thus, I called him that day, and he, the compassionate man that he was, and even though he was extremely busy, called me back within seventy-two hours. As he had predicted - since he knew what he had removed, he had never thought that my cancer had spread - my health was perfect and I could now start to live my life.

So, there I was a normal, healthy person, someone who, indeed, had had Stage 2 breast cancer, but who, at this point, had never had a recurrence. Nevertheless, I had been put through sheer hell because my oncologist was a total incompetent. Moreover, what was even more appalling was that so many doctors had mishandled my case, yet none of them, except Frank, had come forward to apologize. It was as if what I had suffered at there hands was acceptable, that it was simply medical business as usual.

For a few weeks I thought about this experience,wondering how I should proceed. I thought I would hear from Dan about what had been done to discipline Nicole. However, I heard nothing from him and, as time went by, I concluded that he was hoping that I had forgotten this grievous incident.

Moreover, because of his silence, I became convinced that it was I who had to take steps to reactivate interest in my case and try to get satisfaction from the people who had harmed me so badly. Yet I knew that if I brought it forward, then I would have to relive the terrible things that had happened to me and I did not know if I could handle it.

I was still a nervous wreck from this horror, still half believing what Nicole had told me about my imminent death. It was not uncommon for me to wake up in a cold sweat in the middle of the night, terrified that I was not long for this world.

In the end, though, I knew that I had to confront the wrongs done to me because these incidents were too harrowing and I could not push them aside and forget them. Moreover, at this point, as I had told Stephanie, I was not thinking in terms of a lawsuit. I just wanted to get the story to the right people to make certain that it never happened again.