Gene's Story: A Family Tragedy

When a thief is convicted of killing a victim in the course of a botched robbery attempt, it is ruled second-degree murder, and the assailant goes to jail. When a drunk driver is convicted of killing an unsuspecting victim, it is labeled manslaughter or involuntary manslaughter, and he is punished. And yet, when a highly respected medical practitioner causes the death of his patient through error or inattention, we call it negligence and allow insurance companies to make the problem go away. Somewhere in the contemporary moirés of society we have come to accept a different standard by which to judge physicians’ behavior. And, as a result, we allow them to get away with causing the loss of human life, without subjecting them to the normal scrutiny or penalties conferred upon the average “Joe” whose behavior, however unintentional, leads to the death of another.

And what about the scrutiny? What procedures are in place for the men and women of medicine to “keep each other honest?” Where are the checks and balances? In many industries, there are mechanisms in place to regulate the way we do business, to judge acceptable behavior, and to protect the consumer from breaches of conduct. Whether we are referring to ethical financial practices, political regulations or even procedures for governing the preparation and handling of meat, there are standards for looking over each other’s shoulders with the goal of protecting the public. However, in the coveted world of medical care delivery, where physicians are given a wide berth in which to practice, there is a dearth of scrutiny over day-to-day decisions, and colleagues protect each other’s reputations fiercely. And yet, what is at stake is not adherence to the “sell by” date on the package, but whether or not the patient will survive. The patient, in this case was my father. He did not survive.

“Not newsworthy”. Two well-intentioned, ostensibly realistic lawyers told us that our story, that of our father’s death at the hands of his physicians, would not be newsworthy, however compelling it was to us. Their rationale: “it happens every day!” According to an article entitled, To Err is Human – Building a Safer Health Care System “Preventable adverse events [in hospitals] are a leading cause of death in the United States. When extrapolated to the over 33.6 million admissions to U.S. hospitals in 1997, the results of two studies conducted [in New York and Colorado and Utah] imply that at least 44,000 and perhaps as many as 98,000 Americans die in hospitals each year as a result of medical errors. Even when using the lower estimate, deaths in hospitals due to preventable adverse events exceed the number attributable to the 8th-leading cause of death. Deaths due to preventable adverse events exceed the deaths attributable to motor vehicle accidents (43,458), breast cancer (42,297) or AIDS (16,516).” * These figures reflect only those cases that are reported. The actual magnitude of death due to medical errors may be much higher. * “To Err is Human – Building a Safer Health Care System”, Linda Kohn, Janet Corrigan, Molla Donadson, editors, Committee on the Quality of Health Care in America, institute of Medicine, National Academy Press, Washington, D. C. 1999.

Yes, it does happen every day, in every state in every community. The fact that a story like ours has become ordinary, routine, an expected outcome, makes it important to tell because it is indicative of a crisis of epidemic proportions. What is “newsworthy” after all is what the public wants and needs to know, and not necessarily what an editor deems will get the most ‘bang for the buck’. And, what could be more important than hearing someone else’s story which could just as easily be your own? It happened to my father. It could happen to yours.

And then there are the distinguishing details which add to the ‘must read’ nature of our story. The magnitude of the pain left in the aftermath of my father’s death, the number of broken lives which have resulted, the bewilderment that each of us face day after day trying to make sense of this, to reconstruct the events and determine how our own actions might have averted the outcome, the terrific and gnawing pain of our own guilt, however misplaced; all of this makes our father’s plight a story to tell, one worthy of the attention of many.

We were in the end, powerless to affect the outcome for Daddy; unable to change the course of events once the wheels of carelessness and destruction had started to turn. It is the gnawing pain of that powerlessness that compels us not only to fight back, but also to go kicking and screaming. It compels us to not endure our pain and grief in silence, but to broadcast it to anyone from the mildly curious to those in the vulnerable position of potentially receiving “care” from these “healers” (how ironic). It is our duty to rail against those whose credo is “first do no harm.” For their carelessness, their incompetence, their “negligence” in their care of our father, and the indescribable pain that his death has caused, there is no other way, no choice.

And so, in our quest to deal with our loss and to find some way to make sense of the events that lead us here, we turned to the legal system and to the court of public opinion. On the legal front, we have sought to gain credibility, standing. How often have we heard the line, “it’s not about the money.” I can tell you as I write through my tears and anguish that no amount of money could compensate my father for his lost time, or his family for our unending pain. But, if you don’t sue, who is going to take you seriously?! We place greater stock though in our ability to affect some real change by appealing to the media. This is where we believe Daddy’s story will be heard, people will take notice, and the most good can come of warning potential unsuspecting victims. What other means do we have to right the wrong that was done to our father, to our entire family, which must incomprehensively consider a future without our gentle patriarch. We know that we can’t bring him back, but we would stop at nothing to ensure that Daddy did not die in vain. We are seeking some lesson here, some means for Daddy’s death to result in something that makes sense and contributes to making the world a better place, as did his life. And so, we must tell Daddy’s story.

We are conflicted about casting so much attention on the loss of one man’s life at a time when so many thousands of New York families who were shattered by 9/11 are grieving the loss of their own loved ones, many much younger than Daddy’s own 67 well-lived years. But, perhaps our words will give voice to what those families are experiencing, and strike an empathetic chord. We had only one father. He is the only one we will have in this life, and losing him has forever diminished the quality our own lives. We fight for recognition of the loss of his life because it did not have to happen. And, by not speaking out we are as guilty as those who are warned of an impending act of violence and choose not to sound an alert. We have no choice.

Before our very eyes, a respected medical establishment let a man die at the hands of one of its most respected oncology groups. Before our very eyes, veteran physicians, not medical residents, systematically poisoned a man with chemotherapy drugs because they got the orders wrong. Before our very eyes, even concerns that the man was failing fell upon deaf ears and inattentive eyes. Before our very eyes, a man was killed by the same medical establishment that was supposed to protect him. That man was Eugene Leonard Goldstein, age 67, devoted husband for 47 years, loving father of three, beloved “Zayde” to six granddaughters, the youngest born just two weeks before he died, but whom he never saw or held. He was my father.

It is impossible to comprehend the extent of this tragedy without understanding who my father was. He wasn’t famous. His name was not a household word. But within our family and circle of friends he was our hero, our prince. And, his family was everything to him. Daddy would “kvell” at the drop of a dime, but most effusively when surrounded by his wife, his children, his granddaughters, and his grand-dogs. Simple things made him happy. His riches took the form of time spent with those he loved. He was the kind of man who befriended strangers, and meant it. He could run into someone that he hadn’t seen for thirty years, and not only remember their name, but something special about them. He was a man who loved dogs with a passion, and they him. In our family, Daddy was the one who brought home the stray dogs. He went out of his way to make people happy. He went without so that others would not want. When we were young he claimed to prefer meatloaf at the restaurant where the rest of us would feast on lobster once a year. No one had a bigger heart. On the way to see his own doctor when he was ill once Daddy witnessed to a serious accident in which a young woman was pinned by her steering wheel, bleeding and in shock. He ran to the woman’s car and reached in to cradle her head and reassure her until an ambulance finally arrived. He was the kind of man you would want for your guardian angel. He was well-loved, well-respected, an honorable business man, fastidious in his attention to his clients, a man who took great pride in doing his best. And, he was generous to a fault. He would offer jobs to unemployed colleagues even when his own business was slow, he would place orders with sales reps when there was little hope of moving the merchandise. People could count on Gene with a certainty that was beyond question. In our naivety, we believed too that we could count on the physicians in whose hands we entrusted our precious father’s life. It has been over twelve months since we lost my father, since he was torn from us. And still, the disbelief is so fresh, so raw, so palpable. If anything, the intensity of the pain has increased, not abated in this time since last May. Last spring remains a blur, and the summer, fall and winter have given way to painful reflection. We have all traveled through the proverbial stages of grief, from disbelief and denial to anger, and are now left with our sadness, only heart-wrenching sadness. The reality of losing him is so much more acute now that so much time has passed.

The fact of the time that has passed is itself a source of pain for us. By now we all assumed that we might have an outlet for our grief and anger through some concrete response. That we would already have found a means to communicate to those responsible that they cannot get away with the “negligence” that has taken our father and shattered our family. That we would have a tangible weapon with which to combat this type of tragedy and spare other families from the scourge that devastated us. But, the fact is that over twelve months have passed, and we realize that there may never be satisfaction, and certainly, no relief for our grief. We have gone through the painful process of initiating a malpractice suit against the doctors who were responsible for my father’s death; Dr. Mark D. Lipshutz, Dr. Kenneth Gold and Dr. Paul Hyman, known collectively as Hematology-Oncology Associates of Western Suffolk. We would have been remiss had we not sought some sort of legal action against these men. And we have received confirmation from an expert, an oncologist, who confirmed that the actions of this oncology team, and in particular those of Dr. Lipshutz and Dr. Gold, were the likely cause of my father’s death. But, it didn’t take a medical expert to tell us what we already knew; that a crime was committed here, not in the legal sense, but a crime of carelessness, of not finding enough importance in the life of one man to be diligent and prudent and thorough. This has little to do with being a good enough doctor. We are sure that there is a basis for the credentials that these specialists possess. It has to do with being a good enough and caring enough human being to pay attention…to use sound judgment and take responsibility for their actions. It would not have taken a rocket scientist to accurately receive instructions over the telephone, and get them right. In its simplest form, they needed only to follow a recipe that someone else developed.

And, we are left to sweep up the pieces; to deal with the fact that they caused our father’s death, and in doing so, destroyed a part of all of us who loved him. They shattered not one life, but many. Part of what has been gnawing away at us is that no one has been able to communicate to those doctors what they have done to us. Because we are adhering to the protocol, going through the appropriate channels for filing a malpractice claim, we have been unable to let them know how much we are hurting. And, our greatest frustration is that even if we are successful in implicating them for their actions, it may only result in a slap on the hand, a letter of discipline and some minor financial penalty in the form of higher malpractice premiums. They could be completely sheltered from the human consequences of their actions. How ironic!

In April of 2001, our father, Eugene Leonard Goldstein, was transferred from Stony Brook University Hospital to Southside Hospital in Bayshore, New York. His chemotherapy regimen to treat a Primary CNS lymphoma began at Stony Brook, but was borrowed at our family’s request from a protocol developed specifically to treat this type of tumor, a “treatable” tumor, by Dr. Lisa DeAngelis at Sloan-Kettering Memorial Medical Center, in New York. That chemotherapy treatment was to be continued at Southside under the supervision of the oncology group specifically recommended by Southside’s administration, Doctors Lipshutz , Gold, and Hyman,. At the same time, Daddy would be placed in Southside’s intensive physical therapy program for individuals with brain injuries, where he could receive therapy to improve his balance and walking ability that were temporarily impaired by the tumor. We could not consider bringing Daddy home and bringing in therapy services because he was so vulnerable to falling. In that event, my mother, who was still recovering from her own surgery and radiation for throat cancer, would be unable to help him. Daddy was a large man. An in-patient physical therapy program would allow Daddy to regain his strength through intensive therapy over approximately a three-week period, and at the same time receive his ongoing chemo treatments. Our additional motivation for seeking such a program was that our mother was having difficulty breathing and swallowing over the past two months. Her surgeon wanted her to undergo surgery as soon as possible to determine whether her own tumor had returned, or at the very least, to relieve her breathing difficulty by removing additional tissue. We were able to arrange for Daddy’s transfer to Southside on April 20th. Once he was safely installed there Mommy consented to schedule her own surgery for May 1st. She wanted to be able to recover from her surgery and deal with whatever emotional consequences that might require, in time for Daddy to return home from rehab.

Southside, though over a half hour away from Stony Brook was recommended because St. Charles Hospital, just minutes from Stony Brook refused to accept Daddy into their own therapy program, which would have allowed him to continue receiving his chemotherapy at Stony Brook on an intermittent basis. The reason: St. Charles Hospital had established a policy of not accepting oncology patients into their physical therapy program due to reimbursement issues. They explained that according to Medicare, one cannot be an in-patient and out-patient at the same time. Medicare would reimburse St. Charles only for the costs of care delivered under their roof, and not the cost of the chemotherapy delivered elsewhere. St. Charles would have had to absorb the expense of the chemotherapy delivered at Stony Brook, which they were unwilling to do. And so, the transfer to Southside was made. Daddy was admitted to the intensive physical therapy program in their brain injury unit.

It is important to mention that Daddy thrived during his first week in the physical therapy program at Southside, prior to receiving his first chemo treatment there. He tolerated the four hour rigorous regiment of Physical therapy, occupational therapy, and speech therapy. Whereas he entered unable to stand or walk without a walker, by his third or fourth day he proudly demonstrated to family members that he could walk unassisted down the corridor. The combination of the intensive therapy and the reduction of swelling from his tumor were helping him to regain his physical function rapidly. It appeared that Daddy would realize our goal of getting him walking without assistance and back home again within three weeks. At that time he could resume his chemotherapy treatments on an out-patient basis at Stony Brook. We were sufficiently reassured by his progress to be able to turn our attention to getting our mother ready for her own surgery, scheduled for the following week at NYU Medical Center.

But, in spite of our best efforts to make the most appropriate arrangement, there was an insidious force at work to foil our plan. There was a breakdown in the communication between the two hospitals that resulted in the misadministration of chemotherapy drugs, the destroying of Daddy’s immune system, and his subsequent demise within three and a half weeks of arriving at Southside Hospital. We were told that the oncologists at Stony Brook discussed Daddy’s chemotherapy protocol over the phone with the Southside oncologists, and that a fax verifying the regimen was to follow. Apparently, either a fax was sent and misplaced, or was never sent, and the Southside oncologist proceeded to write orders for Daddy’s oncology treatment based on what he had gleaned over the telephone. Daddy was given seven days worth of a chemotherapy drug that he was not scheduled to receive until subsequent treatments, on top of the drugs called for during that treatment. This combination effectively obliterated his white blood cells, or leukocytes, which fight infection within the body. He went into septic shock on the seventh day of receiving that incorrect drug and never woke up.

What went wrong? What went so awry that in the transfer of patient and information between hospitals that a man, my father, died as a result? We may never know, because we will never be privy to the details of the phone discussion between the Stony Brook and Southside physicians. It is curious that a full month after my father’s death, the oncology group at Stony Brook expressed shock when my mother shared the account of my father’s death with them. No one from Southside had contacted them in spite of the fact that he had been under Stony Brook’s care until just a few weeks before his death.

Where were the checks and balances? Even as Daddy sank deeper and deeper into the throws of septic shock they did not second guess themselves..or do anything as far as we know to doublecheck to make sure that they and all those working under their direction had followed the appropriate protocol…at least not until it was too late.

When a plane goes down it is studied and systems are developed to avoid the same error from reoccurring. When a machine causes injury or death it can be redesigned to ensure that the same accident cannot happen again, especially when such consequences are the result of human error. That is what the term “foolproof” means…that people will not have to repeatedly suffer at the hands of fools, or anyone who acts thoughtlessly or negligently, particularly when the consequences can be the loss of life. Given the number of medical “accidents” which occur every year, how difficult would it be to develop a foolproof system to ensure, or at least to attempt to ensure, that the wrong medication, or the wrong dosage of the right medication, is never given again?

Was my father’s death just the unfortunate consequence of an unusual breakdown of communication? Or was it indicative of a pattern of carelessness which recurred throughout my father’s care? Just subsequent to receiving his first I.V. dose of chemotherapy (Methotrexate), at Southside, my mother and two close friends were sitting with Daddy when a nurse came in with another I.V. bag. When my mother asked if that was the Leukovorin that was to be administered every six hours according to the prescribed protocol, to mitigate the toxicity of the Methotrexate, the nurse responded that it was just fluids, and that the Leukovorin was not due for another six hours. It was only after my mother took issue with this that the nurse left the room to check, and came back with the Leukovorin. The nurse claimed that she had trouble reading the doctor’s orders. We wondered at the time what the impact would have been for Daddy of missing the dose of Leukovorin. As it turned out there were more toxic and damaging substances being pumped into his body, and it didn’t matter in the long run. On May 4th Daddy went into septic shock, a comatose state, and was rushed to the intensive care unit (ICU).

Then began for us the ten day vigil in the ICU, when we slept in the waiting room, ate little, and stood for hours on end at Daddy’s bedside holding his hand and searching imploringly into his eyes for some sign of recognition and recovery. But it never came. At first Daddy was semi-conscious in his septic state, where he would turn his head toward our voices, respond physically to touch and pain, and tear at his restraints which prevented him from pulling at his IV lines and naso-gastric tubes. But, as days went by he seemed to descend deeper into a comatose state, and with this to require greater assistance with breathing, eventually requiring a respirator and higher and higher oxygen level to keep his ‘pulse-ox’ level high enough to sustain him.

At the same time that we were struggling to pull him out of this abyss, we were fighting battles on other fronts. It was clear, with a few glowing exceptions, the ICU nurses had written my father off. In response to our questions regarding his severe body rashes, swollen hands and Daddy’s apparent discomfort, we were met with comments like, “you know, he is gravely ill,” and, “this is to be expected of someone in this state.” We notified the oncologist on duty that if we were clinging to every shred of hope, it only added to our anxiety to know that the nurses had none. And then, there was the daily agonizing blood count which would tell us whether Daddy’s white cell count was recovering enough to fight the virulent, opportunistic infections that raged in his body unchallenged. In the first days of his septic shock, Daddy’s white cell count was still diminishing as a result of the buildup in his body of a toxic level of chemicals. By his third day of septic shock the count began to stabilize, but at between 200 and 300 cells per microliter, which was essentially the “bottom of the barrel.” Normal counts range from 4,500-10.000 cells/mcl. Subsequent daily reports indicated no appreciable improvement in Daddy’s blood cell count in spite of high daily doses of Nupigen, the only available drug known to stimulate the growth of leukocytes. But, the chemotherapy drugs were apparently so complete in their virulent attack on Daddy’s cells, the bad and the good, he was left with no immune system at all.

And then our vigil took on an entirely new focus when on day seven of Dad’s septic shock, the two oncologists who had been following Daddy most closely, Doctors Lipshutz and Gold, requested a meeting with the immediate family to “review Daddy’s case”. Dr. Lipshutz did the talking. He revealed to us that Daddy’s septic shock was most likely caused by an error they had made in his treatment. When Daddy’s immune system was not responding to the Nupigen treatments they began to question whether his septic shock was just an exaggerated reaction to chemotherapy. When they finally went back to their records, a full week after he went into shock, they determined that they had administered an additional drug for seven days that should not have been combined with that particular treatment.

We sat and listened to this speech in disbelief and horror. And yet, we were quiet and dignified. We did not reach out at them with flailing limbs, tearing pieces from them, as was our instinct. We were in shock. They stated that an error like this had never occurred in their twenty years of practice, and that this was especially difficult for them because they had caused pain to such a wonderful and loving family. They said they would be reporting their error to the State on their own, and were taking full responsibility for the situation, and were in no way blaming Stony Brook. They would understand it if we had lost faith in them and wanted to consider an alternative group or setting for Daddy. And still, we sat and quietly wept at this painful, new revelation.

It had been bad enough to accept Daddy’s dire condition when we believed that his own body was rejecting or overreacting to a treatment that he needed to save his life. But the revelation that it was human error that placed him in this state was too much to bear. My mother, who had undergone her own follow-up surgery for her throat cancer one week before, lost all strength and resolve and remained in bed for the next several days, unable to face the tenuousness of Daddy’s condition and the outrageous circumstances that had caused it.

So we numbly listened to their confession, we agreed that to move Daddy at that time would put him at even greater risk, and we begged them to do all that they could to bring him back…to be diligent in their attention, when we had no faith even that they were capable of that. At the same time, we contacted oncology teams at Sloan-Kettering and Stony Brook to ascertain that all that could be done was being done. They confirmed that when someone’s immune system was so severely compromised, regardless of the cause, the only recourse was to keep them stable and force their white count up in any way possible. We had no alternative but to wait.

The epilogue to Dr. Lipshutz and Gold’s speech to us was that there was good news. They were very confident that Daddy would pull through. In fact, word from the lab that day was that Daddy’s white cell count had rebounded, rising from a count of 300 to 3000 since the day before. This indicated that his body now had the resources to fight infection. These same oncologists who had just revealed their responsibility for Daddy’s struggle used this development to buffer the severity of their actions. The bad news is, we are responsible for the fact that your father is barely clinging to life. The good news is that his body is fighting back. More bad news came just twelve hours later when Dr. Lipshutz called to say that the reported improvement in Daddy’s blood count was erroneous, due to lab error. It had not actually risen at all. These errors were not uncommon. Once again, he was sorry, but still had faith that Daddy would pull through. While we too clung to that hope, we had no remaining faith in Daddy’s physicians, or Southside Hospital. However, we were out of options. We once again fought back our tears and begged for the doctors’ diligence in bringing Daddy back.

But, day-by-day Daddy faded further away. No amount of prayer, songs or tears, no amount of massaging his swollen hands and feet or shouting his name could hold onto him as he slipped from our grasp on the tenth day. His heart finally gave way after fighting one virulent infection after another, with no available defenses. We prayed that he was so deep into unconsciousness by that point that he didn’t suffer. It was the one hope we had left.

Just hours after Daddy took his last breath, Drs. Lipshutz and Gold called my sister and I, dividing up the dirty work, so to speak. They told us that they were sorry for our loss, but that when the family felt up to it, they wanted to sit down with us to discuss “the case.” They stated that the situation was not quite as clear as they had suggested when they reported their error to us, and that some of the fault for what transpired might indeed rest with Stony Brook. I cut off the conversation by asking that I be allowed to grieve in peace, incredulous that they would use such bad taste and judgment in making excuses and blaming others for their actions within hours of Daddy’s death. There are no words to describe the mixture of grief, pain and outrage that gripped us at that moment, just hours from the time that Daddy died at the hands of his ‘healers.’

We tell this story because in spite of the more than twelve months that have passed, in spite of regular therapy to help each of us deal with our grief and guilt over decisions we made on Daddy’s behalf, the pain has only intensified. We tell this story because there has been no abatement of the incessant replay of the detail in our minds, no relief to the inimitable attempts to make sense of what doesn’t make sense. And yet, incomprehensibly, there have also been twelve months of uninterrupted medical practice and normal and happy family life for three men who have completely interrupted the lives and capacity for happiness of the family and friends of Gene Goldstein, who in his own life worked tirelessly only to do the right thing and make others happy.

What is our goal in sharing these painful details with the world? What is our desired outcome? Regardless of the response from the legal system, and whatever the public decides, our father is gone forever. Whatever future happiness we enjoy will be bittersweet because life just holds less joy for us. But, it will never be said that Eugene Leonard Goldstein did not leave the world a little changed for his having lived, and died. Those who knew him were graced by his love, compassion and goodness. And, those who were not so fortunate to have been touched by his life, may benefit from the legacy of his death. Every human being has an inherent value, and deserves to be handled with respect; at the very least, to be handled with care.

• PULSE AMERICA

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