[Congressional Record Volume 141, Number 150 (Monday, September 25, 1995)]
[Senate]
[Pages S14206-S14209]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         ADDITIONAL STATEMENTS

                                 ______


                          KENNETH B. SCHWARTZ

 Mr. KERRY. Mr. President, I want to take a moment today to 
remember Kenneth B. Schwartz of Brookline, MA. I first worked with Ken 
when I was Lieutenant Governor and he was general counsel to the 
executive office of human services. He had a brilliant analytical mind, 
a keen sense of humor, and most important, he was one of the purely 
nicest human beings ever to walk the face of the Earth. He cared deeply 
about the most vulnerable among us, the elderly, the poor, the mentally 
ill.
  Tragically, he was diagnosed last November with cancer. Despite 
having the best medical care available, Ken died September 10, at age 
40, leaving his wife, Ellen Cohen, and his 2-year-old son, Benjamin.
  Despite pain, surgeries, the devastating effects of chemotherapy, and 
the mental anguish that knowledge of his condition brought, Ken turned 
his experience into something quite remarkable and enormously valuable 
for both those afflicted with cancer and those who treat them.
  The son and brother of doctors, Ken wrote an article for the Boston 
Globe magazine on his experience as a patient, and his relationship 
with the caregivers at the teaching hospital where he was treated. 
Ken's article opened the eyes of the medical community in a way that 
rarely occurs even in the most sympathetic and responsive of hospitals. 
His article came to the attention of the ``Good Morning America'' show, 
which featured him in one of its segments. During this all-too-brief 
period of time, he also helped establish the Kenneth B. Schwartz Center 
for the Study of Caregiver-Patient Relationships at Massachusetts 
General Hospital, so that the lessons he learned from his illness might 
be studied and broadened to the benefit of future patients, their 
doctors and other caregivers.
  As was said of Sir Thomas More, Ken was:

       A man of angel's wit and singular learning; I know not his 
     fellow. For where is the man of that gentleness, lowliness 
     and affability? And as time requireth, a man of marvelous 
     mirth and pastimes; and sometimes of as sad a gravity; a man 
     for all seasons.

  I ask that his Boston Globe article be placed in the Congressional 
Record at this point, and I commend it to all my colleagues in the 
Congress.
  The article follows:

            [From The Boston Globe Magazine, Jul. 16, 1995]

                           A Patient's Story

                        (By Kenneth B. Schwartz)

       Until last fall, I had spent a considerable part of my 
     career as a health-care lawyer, first in state government and 
     then in the private sector. I came to know a lot about 
     health-care policy and management, government regulations and 
     contracts. But I knew little about the delivery of care. All 
     that changed on November 7, 1994, when at age 40 I was 
     diagnosed with advanced lung cancer. 

[[Page S 14207]]

     In the months that followed, I was subjected to chemotherapy, 
     radiation, surgery, and news of all kinds, most of it bad. It 
     has been a harrowing experience for me and for my family. And 
     yet, the ordeal has been punctuated by moments of exquisite 
     compassion. I have been the recipient of an extraordinary 
     array of human and humane responses to my plight. These acts 
     of kindness--the simple human touch from my caregivers--have 
     made the unbearable bearable.
       During September and October of 1994, I made several visits 
     to the outpatient clinic of a Boston teaching hospital for 
     treatment of a persistent cough, low-grade fever, malaise, 
     and weakness. The nurse practitioner diagnosed me as having 
     atypical pneumonia and prescribed an antibiotic. Despite 
     continued abnormal blood counts, she assured me that I had a 
     post-viral infection and didn't need an appointment with my 
     physician until mid-November, if then. By mid-October, I felt 
     so bad that I decided I could not wait until November 11 to 
     be seen. Disappointed with the inaccessibility of my 
     physician, I decided to seek care elsewhere, with the hope 
     that a new doctor might be more responsive.
       My brother, a physician who had trained at Massachusetts 
     General Hospital, arranged for an immediate appointment with 
     Dr. Jose Vega, an experienced internist affiliated with MGH. 
     Dr. Vega spent an hour with me and ordered tests, including a 
     chest X-ray. He called within hours to say he was concerned 
     by the results, which showed a ``mass'' in my right lung, and 
     he ordered a computerized-topography scan for more detail. I 
     remember leaving my office for home, saying quickly to my 
     secretary, Sharyn Wallace, ``I think I may have a serious 
     medical problem.'' Indeed, the CT scan confirmed abnormal 
     developments in my right lung and chest nodes.
       The next day, Dr. Vega, assuring me that he would continue 
     to be available to me whenever I needed him, referred me to 
     Dr. Thomas Lynch, 34-year-old MGH oncologist specializing in 
     lung cancer. Dr. Lynch, who seems driven by the ferocity of 
     the disease he sees every day, told me that I had lung 
     cancer, lymphoma, or some rare lung infection, although it 
     was most likely lung cancer.
       My family and I were terrified. For the next several 
     months, my blood pressure, which used to be a normal 124 over 
     78, went to 150 over 100, and my heart rate, which used to be 
     a low 48, ran around 100.
       Within 72 hours of seeing Dr. Lynch, I was scheduled for a 
     bronchoscopy and a mediastinoscopy, exploratory surgical 
     procedures to confirm whether I indeed had lung cancer. 
     Until this point, I had thought that I was at low risk for 
     cancer: I was relatively young, I did not smoke (although 
     I had smoked about a cigarette a day in college and in law 
     school and for several years after that), I worked out 
     every day, and I avoided fatty foods.
       The day before surgery, I was scheduled to have a series of 
     tests. The presurgery area of the hospital was mobbed, and 
     the nurses seemed harried. Eventually, a nurse who was to 
     conduct a presurgical interview called my name. Already 
     apprehensive, I was breathing hard.
       The nurse was cool and brusque, as if I were just another 
     faceless patient. But once the interview began, and I told 
     her that I had just learned that I probably had advanced lung 
     cancer, she softened, took my hand, and asked how I was 
     doing. We talked about my 2-year-old son, Ben, and she 
     mentioned that her nephew was named Ben. By the end of our 
     conversation, she was wiping tears from her eyes and saying 
     that while she normally was not on the surgical floor, she 
     would come see me before the surgery. Sure enough, the 
     following day, while I was waiting to be wheeled into 
     surgery, she came by, held my hand, and, with moist eyes, 
     wished me luck.
       This small gesture was powerful; my apprehension gave way 
     to a much-needed moment of calm. Looking back, I realize that 
     in a high-volume setting, the high-pressure atmosphere tends 
     to stifle a caregiver's inherent compassion and humanity. But 
     the briefest pause in the frentic pace can bring out the best 
     in a caregiver and do much for a terrified patient.
       The nurse left, and my apprehension mounted. An hour later, 
     I was wheeled to surgery for a biopsy of the chest nodes and 
     the mass in my lung. I was greeted by a resident in 
     anesthesiology, Dr. Debra Reich, who took my pulse and blood 
     pressure and said gently: ``You're pretty nervous, huh?'' She 
     medicated me with tranquilizers, but that did not stop me 
     from asking about where she lived, where she had trained, and 
     whether she was married. I jokingly asked her how come she 
     was the only Jewish doctor I had met during my time at MGH. 
     When it turned out that she lived down the street from me and 
     liked the sandwiches at the same corner shop, Virginia's, I 
     felt comforted. She squeezed my shoulder, wished me luck, and 
     wheeled my into surgery.
       When I awoke, I was told that I had adenocarcinoma in my 
     right lung and in several chest nodes--in other words, 
     advanced lung cancer. I don't remember a lot about those 
     hours, but I remember Dr. Vega's face, with tears in his 
     eyes. I also remember feeling very sad and scared.
       A few days later, I received a letter from Dr. Reich: 
     ``Remember me, your friendly anesthesiologist? I came by to 
     see you this afternoon as my professional duty but also to 
     express my sadness in hearing about your diagnosis. Your door 
     was closed and there seemed to be a lot of activity, so I 
     decided not to disturb you.
       ``As I'm sure you know, we as physicians are taught not to 
     become emotionally involved in our patients because then we 
     would be continually devastated. But I guess because we had 
     such a nice interaction before your surgery and because your 
     life was one which I could relate to so well--being Jewish, 
     professional, renovating a house, sandwiches, at Virginia's, 
     etc.--your situation really struck a chord in me. (Hey, maybe 
     you can't even remember any of this because of the medicine I 
     gave you, but hopefully you do . . .)
       ``I was very impressed that during the fear and anxiety you 
     were experiencing, you still maintained your composure, your 
     sense of humor, and even thought to ask me when I was 
     getting married.
       ``So, anyway, as you told me, keeping your wife and son in 
     mind will make you fight strong, and I know this to be true! 
     I know that you have a very loving and supportive family who 
     will help you through this as well.
       ``Best, wishes, and maybe I'll run into you sometime at 
     Virginia's.''
       I had not forgotten Dr. Reich, nor will I ever forget her 
     willingness to cross the professional barrier, hold my hand, 
     and write those words.
       It was clear that I would soon begin a new chapter in my 
     illness and undergo the classic treatment for such advanced 
     cancer, intensive chemotherapy and radiation, followed by 
     surgery to remove the tumors, nodes, and entire lung, if 
     necessary. Dr. Lynch told me that this option presented the 
     real possibility of a cure.
       Over the next week, I had a series of additional radiologic 
     scans to determine if the cancer had spread beyond my chest. 
     These scans are incredibly scary: You are placed in a tube 
     resembling a sarcophagus, with only 6 inches between you and 
     the walls, and you may spend several hours inside, deafened 
     by the clanging machine. And the scans always raise fears 
     about whether more bad news in around the corner.
       Dr. Vega or Dr. Lynch always made it a point, though, to 
     relay results within 24 hours so my family and I didn't have 
     to endure the anxiety of uncertainty any longer than 
     necessary.
       The scans of my body, head, liver, bones, and back were 
     clear. I was relieved.
       The doctors soon began an intensive regimen of chemotherapy 
     and radiation, with the goal of destroying the cancer and 
     preparing for surgery to remove my lung.
       Before being admitted for my first five-day course of 
     chemotherapy. I had a radiation-simulation session. During 
     such session, therapists meticulously map their targets by 
     marking your skin where the radiation should be directed. I 
     was asked to lie on a table in a large, cold chamber. The 
     radiation therapist. Julie Sullivan, offered me a blanket 
     and, mentioning that the staff had a tape deck asked if I had 
     any request; I recalled my college days and asked for James 
     Taylor. Listening to ``Sweet Baby James'' and ``Fire and 
     Rain'' I though back to a time when the most serious problem 
     I faced was being jilted by a girlfriend, and tears ran down 
     my cheeks. As therapists came and went, Julie Sullivan held 
     my hand and asked me if I was OK. I thanked her for her 
     gentleness.
       After having a Port-o-Cath implanted in my chest--a device 
     that allows chemotherapy to be administered without constant 
     needle sticks in the arm--I was admitted to MGH in mid-
     November. During that and other hospitalizations, either my 
     mother or sister would stay overnight, often sleeping in 
     cramped chairs. When I awoke at night in an anxious sweat or 
     nauseated, I would see one of them and feel reassured.
       While doctors managed my medical cure, my day-to-day 
     quality of life and comfort were in the hands of two or three 
     nurses. These nurses showed competence and pride in their 
     work, but they also took a personal interest in me. It gave 
     me an enormous boost, and while I do not believe that hope 
     and comfort alone can overcome cancer, it certainly made a 
     huge difference to me during my time in the hospital.
       During the period between my two chemotherapies, when I 
     also received high-dose radiation twice a day, I came to know 
     a most exceptional caregiver, the outpatient oncology nurse 
     Mimi Batholomay. An eight-year veteran who had experienced 
     cancer in her own family, she was smart, upbeat, and 
     compassionate I had to receive fluids intravenously every day 
     at the clinic, and while there we talked regularly about 
     life, cancer, marriage, and children. She, too, was willing 
     to cross that professional Rubicon--to reach out and talk 
     about my fear of dying or, even worse, my fear of not living 
     out my life, of not biking through the hills of Concord and 
     Weston on summer weekends with my brother, of not seeing my 
     child grown up, of not holding my wife in my arms. And she 
     took the risk of talking about her own father's recent bout 
     with cancer. I cannot emphasize enough how meaningful it was 
     to me when caregivers revealed something about themselves 
     that made a personal connection to my plight. It made me feel 
     much less lonely. The rule books, I'm sure, frown on such 
     intimate engagement between caregiver and patient. But maybe 
     it's time to rewrite them.
       After my second round of chemotherapy, I was ready for the 
     final stage of what we hoped would be a cure: surgery. Before 
     this could happen, Dr. Lynch repeated my radiologic scans, to 
     be sure that the cancer 

[[Page S 14208]]
     had not spread. He assured me that the chance of any such metastasis 
     was remote--less than 5 percent--although it would be a 
     disaster if it occurred.
       The scans were endless, scary; and lonely. While members of 
     my family stayed with me in the waiting rooms, they could not 
     accompany me to the scanning rooms; the experience again was 
     harrowing. But I felt my greatest fear while awaiting the 
     results. After a week of tests, I had one last scan of my 
     bones. I was concerned when the technologist asked to do a 
     special scan of my back that had not been done before.
       The next day, I called Dr. Lynch's office and asked his 
     assistant, Mary Elen Rousell, when I could come in to find 
     out the results. She said, ``How about this afternoon?'' and 
     then added, ``You might want to bring someone.'' My heart 
     skipped. When my wife and I entered Dr. Lynch's office and 
     saw his face, our hearts sank. He was ashen. He said that 
     while all the other scans were clear, there appeared to be a 
     metastatic tumor in my spine. He explained that this meant 
     that lung surgery at this point would be futile, since other 
     metastases were likely to surface.
       Dr. Lynch said that he could not be 100 percent certain 
     that this was a tumor and that, because so much was at stake, 
     we should do a biopsy. My wife and I wept openly--in part 
     because, looking at Dr. Lynch's face, we felt that he had 
     lost hope.
       I could not help but ask what treatment options were 
     available, and he mentioned a drug called Taxol. Still being 
     the lawyer, I quizzed him:
       Me: What is the percentage of people who benefit from 
     Taxol?
       Dr. Lynch: Forty percent.
       Me: How much do they benefit?
       Dr. Lynch: They can get several years of life, although it 
     is not a cure. And the median survival for patients on Taxol 
     with your advanced state of disease is nine months.
       Nine months! My wife and I cringed. I ended the session by 
     asking Dr. Lynch, ``How do you do this work?'' And he 
     answered, in genuine pain, ``By praying that I don't have 
     days like today.''
       I began to have trouble sleeping, and when I awoke, I was 
     filled with dread and despair. I thought frequently of the 
     observation of Richard Block, the founder of H&R Block, who 
     had survived lung cancer after being told initially that he 
     had only months to live: ``I lived for five days without hope 
     and . . . my life during those five days . . . was far worse 
     than at any time during the `horrible' ordeal of tests or 
     treatments.''
       And when I contemplated not living to see my son grow up or 
     not cherishing my wife for a lifetime, I thought of King 
     Lear, who, at a low point, wailed:
     I am bound
     Upon a wheel of fire, that mine own tears
     Do scald like molten lead.
       I desperately needed to regain hope, and I needed Dr. Lynch 
     to regain his sense of hope.
       A few days later, I had the biopsy. Dr. Lynch met with my 
     family to report that, indeed, after considerable searching, 
     the pathologist had found small deposits of adenocarcinorea 
     in my vertebra. It was now confirmed that I had metestatic 
     lung cancer. Although my brother and my father, who is also a 
     physician, raised the possibility of radical surgery on my 
     back and lung to remove all the tumors, Dr. Lynch and the 
     surgeons rejected this option because further metestates were 
     likely to appear, and the surgery would be debilitating and 
     reduce my quality of life at a time when my life could well 
     be substantially shortened.
       The clear treatment was more chemotherapy. Dr. Lynch again 
     recommended the use of Taxol, with the hope of slowing the 
     cancer's spread.
       My wife and I were largely silent during the medical 
     discussion. I asked my father and brother to leave so my wife 
     and I could talk not facts and figures but matters of the 
     heart. When they had left, I said to Dr. Lynch, ``You told me 
     two things all along: One, that you were aiming for a total 
     cure, and if that were not feasible, you would tell me at 
     that time. And two, you would never, ever give up on me, 
     never stop trying to fight, to extend my life as long as 
     possible. Am I no longer on the cure route?''
       He looked somberly at us and explained that there were no 
     known treatments to cure this stage of cancer.
       ``And will you stick by me and fight to the end?'' I asked.
       He nodded vigorously and then outlined a number of state-
     of-the-art, experimental protocols from which I might benefit 
     after Taxol.
       And, leaving statistics behind, he talked of several 
     patients who had defied the odds and lived for years beyond 
     expectations. He advised that my goal should be to be here 
     the same time next year, and then the year after, and the 
     year after--one day at a time, one month at a time, one year 
     at a time. He mentioned several breast-cancer patients who 
     had told him that they had relished their final years with 
     their children in a way that they had never known before. It 
     felt good to leave the medical talk and speak heart to heart, 
     and it felt to me that he had regained a sense of hope--not 
     for some magical cure but for the possibility of extending my 
     life.
       It was critical to my wife and to me that he not give up 
     hope. I understood his surprise and disappointment at the 
     metastasis; in fact as one friend suggested, his distress in 
     that event was a sign of his caring about me and his 
     involvement with my case. But we desperately needed him to 
     give us a realistic basis for hope--and he had.
       The next day, I began a new chapter in my fight. And once 
     again, Mimi Bartholomay was by my side, monitoring my 
     reaction and assuring me that most people tolerated Taxol 
     very well. I had no allergic reactions, and I felt good that 
     the battle was under way. I had hoped that maybe this would 
     buy me time. Time was now my best friend, since it could 
     allow medical research to advance and doctors to find new 
     strategies and maybe even a cure for advanced lung cancer.
       During this period, with help from my father, who has had a 
     long and distinguished career in academic medicine, I began 
     to explore potential cutting-edge protocols that could 
     supplement or follow Taxol.
       My father arranged a meeting for my wife and me with Dr. 
     Knot J. Isselbacher, a distinguished researcher and director 
     of the MGH Cancer Center. He is a small man with a large 
     presence and piercing blue eyes, and he was surrounded by 
     medical books, papers, and many pictures of his family. He 
     was upbeat, telling us of protocols under way that showed 
     promise in fighting metastatic tumors. Like several others, 
     be told me a personal story that cut to the bone: A close 
     family member, he said, had been diagnosed with advanced 
     cancer, which the attending oncologist had said was ``very, 
     very bad.'' The family member had said to him: ``Kurt you 
     have helped so many people in your lie, can you now help 
     me!'' He personally treated the family member in that 
     person's home with chemotherapy, and, 21 years later, that 
     person is thriving.
       Dr. Isselbacher offered to serve as an advocate for me, to 
     work with my father and Dr. Lynch to find the most promising 
     protocols. I told him at the meeting that while I had no 
     illusions, I was deeply moved by his refusal to give up and 
     by his abiding hope; I was especially affected because such 
     hopefulness was not coming from a faith healer but a 
     distinguished researcher. He has strengthened our resolve to 
     fight.
       As I grappled to maintain my hope in the face of the 
     advancing disease, I was referred to Dr. Ned Cassen, a senior 
     MGH psychiatrist who not only had had vast experience with 
     the seriously ill but was himself a Jesuit priest. I had met 
     with him once during my second hospitalization, and my memory 
     through the haze was that he was the first person with whom I 
     had discussed death. I remembered that when I had asked him 
     if, when, and how I should say goodbye to people, he said, 
     ``You know, you don't have to wait to say goodbye; you can 
     express you love and appreciation for people right now, every 
     day.''
       After the devastating news of the metastasis, I felt the 
     urge to seek our Dr. Cassem again, in part to ask if there 
     was anything more I should be doing to help my son, Ben, cope 
     with my illness or the eventuality of my death. I mentioned 
     that several people had suggested I make a videotape for Ben 
     but that I thought I couldn't do that. Dr. Cassem replied 
     that every time we played or laughed together, we were 
     creating building blocks, precious memories that will be part 
     of him forever.
       I also asked him if he thought I should be doing more to 
     prepare for the possibility of an early death. He looked 
     perplexed and asked, ``Have you prepared your will?'' I said 
     yes. ``Are your affairs otherwise in order'' I again said 
     yes. ``So it sounds like you are prepared. . . . Remember, 
     death is a minor matter. Living . . . that's the challenge.''
       I then told him of the paradox that moments of great 
     pleasure--playing with my son, snuggling with my wife, 
     talking intensely with friends--also caused me great pain and 
     tears. Was I depressed? Was this something to worry about? He 
     looked at me thoughtfully and said: ``When you cry about your 
     son, it's because he has touched you deeply. It's an 
     affirmation of your love for him. When you weep about the joy 
     you experience with your wife or close friends that's an 
     acknowledgment of your love for them. That's not a bad thing. 
     . . . Maybe a day without tears has been a dull day.'' I 
     nodded and then could not help but ask: ``Do you believe in 
     the power of prayer'' Dr. Cassem nodded. ``Absolutely,'' he 
     said, ``and your name is on my prayer list.'' I felt warmed 
     in his presence, by his wisdom, his common sense, and his 
     spirituality.
       In recent months, I have had several setbacks: a bone scan 
     that showed four to five additional tumors, and a CT scan 
     that showed significant progression of the cancer in both 
     lungs. The only good news was that it had not spread to my 
     head or liver. I am pained, but not surprised, at the 
     relentlessness of the disease, and I am straining to retain 
     hope that one of the experimental treatments may succeed 
     where chemotherapy has failed.
       For the first time, I recently mentioned to Dr. Lynch the 
     idea of a hospice service and wondered how I might reduce 
     future pain as the cancer progresses. Dr. Lynch answered that 
     we were still a long way from that discussion, that we still 
     had many avenues to explore, and that he remained as 
     committed as ever to doing whatever he could to extend my 
     life in a quality way.
       Around the time of the CT scan, when I was feeling 
     particularly dejected, I had an appointment with Mimi 
     Bartholomay for an injection. She was running late, and as 
     she approached me in the clinic waiting room, she looked 
     harried. But as she got closer, she could see how unhappy I 
     was, and she put her arm around me and directed me to a 
     private room. I began to cry, and she intuitively responded: 
     ``You know, scan days are the 

[[Page S 14209]]
     worst. But whatever the results, we are not going to give up on you. 
     We're going to fight with you and for you all the way.'' I 
     hugged her and thanked her for hanging in there with me.
       If I have learned anything, it is that we never know when, 
     how, or whom a serious illness will strike. If and when it 
     does, each one of us wants not simply the best possible care 
     for our body but for our whole being.
       I still am bound upon Lear's wheel of fire, but the love 
     and devotion of my family and friends, and the deep caring 
     and engagement of my caregivers, have been a tonic for my 
     soul and have helped to take some of the sting from my 
     scalding tears.

                          ____________________