We are very grateful to The Arnold P Gold Foundation for substantial support for publication of this second edition of our book "MUST I THINK ABOUT DEATH? NOW?" As before, we have economized on production of the book since we plan to use it again as a resource for our education program, "Death, Dying and Grieving" in the first week of the first year of Medical School Curriculum.
We have been blessed each year with a talented group of facilitators and speakers, and they are all enthusiastic about participating. As with the first edition, Ms. Sue Nicodemus, who is the course coordinator, has been most helpful in preparation and publication of the book. Our first addition to the literature at the end of the book, is a sermon written by one of our facilitators, Rev. Annie L. Foerster, about Dr. Kevorkian before he was sent to prison. We felt her comments were worth including in our book.
We are all much obliged to a number of our facilitators, specifically Rosiene Weaver, RN, JD, Hettie Noever, RN, Anne Lovell, MSN, Elizabeth Gothelf, RN, MA, and Ken Czillinger (Hospice Director of Bereavement) who have all helped with evaluation, review and suggestions about modifying the curriculum.
A complete list of those who have helped over the past three years is at the end of the book. There is a list of student authors but their names are not attached to a specific essay.
We are experimenting with the potential of the College of Medicine Web-site. Since the College is the publisher we can place the entire volume in the Web-site. The students will then have the option of buying the book or they can access the Web and print out essays they are required to read for the next session of the class. Others can also have access from outside the University.
The essays which make up this book were submitted as a requirement in the "Death, Dying and Grieving" component of the "Introduction to Clinical Practice I", a first year course at the College of Medicine, University of Cincinnati. Since the course started in 1991 we have collected a number of essays each year, to be placed on reserve in the Library because they were interesting and representative in some way of the reactions of the class as a whole. They were not chosen wholly on their literary merit, or for their impact on the reader. Some were very revealing and deeply personal. It has been a core principle of the course that there are limits of privacy that should not be crossed - and that we should not even suggest crossing. We feel this to be particularly important since a number of essays show a high level of trust in those reading and grading. We are concerned not to cross the boundaries of privacy of those writing.
The course was suggested by Bruce Swarney, MD, who did an elective in Ethics when he was a fourth year student. He felt that the college had given him little exposure and training in handling the issues involved with the deaths of his patients and needs of their families. He had the misfortune to have had a favorite niece die from a treatment-resistant form of acute leukemia. The experience was made worse for him because he was the only member of the family who had even a remote connection with the medical field. He was therefore expected to know what to do, and then explain to his family how such a tragedy could occur. The family members were struggling because they felt that the physicians responsible for her care had not been involved, nor interested in such discussions. Dr Swarney searched the literature while still a student to see how many medical schools did offer such training and found that there were only a few. The University of Cincinnati was not among them.
We had him present his findings and recommendations to the Curriculum Committee which was sufficiently impressed to authorize a Year I elective program for the following year. This initial program consisted of one or two students at a time meeting with a professional who was knowledgeable about human difficulties arising from death and grieving. These meetings lasted for up to three hours and focused on dealing with the concerns of dying patients and their families - in the Emergency Room, Neonatal Intensive Care Unit and other settings.
The professionals involved were nurses, social workers and clergy. The student responses were highly complimentary, so much so that the Curriculum Committee agreed that this should be a mandatory course, rather than an elective, the following year.
We have also had interesting lessons from the course. Students have varying attitudes and interest levels, but are consistently enthusiastic. A more important change has been in the level of free time that our faculty members have available. We could count on their free time years ago, when we started the course. However with the emphasis on small group discussions, and tours of places where nurses, social workers, nurse practitioners, chaplains and physicians carry out their duties it became progressively more difficult to set up "on-duty tours."
We had to abandon tours partially after four years and completely after six. Filling all the faculty slots is a problem each year. Ideally, we need to fill over 100 slots since we prefer to have one physician and one other professional for each small group session. Pairing is made on the basis of knowledge, facilitating skills and dedication.
The course has been given eight times to date (1999). It evolved into three sessions each lasting for three hours. In 1997 we were forced into a hybrid pattern in which there were three sessions, the first and last being only one and a half hours, the middle being three hours. Neither the students nor the faculty liked the arrangement and this year we are back to the original three sessions of three hours each. We have also made two substantive changes, the first that we have changed the video we used for that third session "The Los Altos Story." It won an Oscar as a documentary and was a very accurate, and moving story of what happened when HIV involved the Rotary Club in that town. The video is as good as ever, but is now not an accurate presentation of the current impact of HIV. This year we showed the three ABC videos of interviews with Morrie Schwartz by Ted Koppel, one with each class session. The first emphasizes the need to discuss death, the next, reaching the time when decisions have to be made and in that last session, when, and how to say farewell.
The second change was in reaction to the background of entering students. We seldom heard in the early years of the program about students' familiarity with suicide and murder. In 1998 we had 41 students (out of 160) who had been close to suicide, murder or both. We are adding a segment this year specifically addressing suicide and its impact of guilt on families and friends.
Grading a program like this is difficult since it is so short, and has very little factual material on which to base an objective examination. A passing grade is based on attendance at small group sessions, completing an anonymous profile and submitting an essay of less than five, double-spaced pages. The essay can comment on a presentation in the classroom, or discuss one of the essays we have in this book which we provide for them, or some personal experience they have had with death or another type of loss. In the first session we have several senior students who are willing to discuss what sort of loss they experienced in, or near the first year, how the College reacted and helped them, and how their classmates assisted them. While this has had several good effects, the most believable and important is that upper class students tell the new students how they were assisted and by whom. Our College has a very supportive attitude and is willing to go to great lengths to enable students, if they are capable of coping, to graduate with their classmates. One thing that senior students always emphasize is that the most important aspect from their perspective is support from other students - anything but tactful silence!
Another concept the course has adopted and has helped to implement is the "Safe Haven," which has been adopted by the Year I Curriculum Committee and by the other courses and divisions. When we first discuss the Safe Haven we point out that as medical students, they are generally over-achievers who feel (with good reason) that they have to do better than the other applicants, and take advantage of any options and opportunities. We explain to them that for the rest of their professional lives nearly all of them will have to depend on cooperation with their peers. In any professional group, and in fact almost any group of professionals/specialists who work together, not necessarily in Medicine, it is very important to be able to count on talking to colleagues with whom one can discuss problems, dilemmas, difficulties and anxieties. Each professional has to be an understanding and supportive audience, and to demonstrate that they will listen with interest, with sympathy, and that criticism, pejorative comments, expressions of superiority or ridicule will not be forthcoming. This is not an easy task for either the speaker or the audience when many of those involved in a course such as ours, are inexperienced and nervous. Since this course is taught at the very beginning of medical school students have not had time to get to know each other and to be comfortable with other members of the discussion group. Instructors generally understand also that in the first week of the first year they have not had time to develop a vocabulary, so we have to speak "Basic English," as much as possible. This is one of the main reasons why facilitators are so important. Given the limited time we have, our main objective and hope is that we can plant the seed and pray that it flourishes as they move through medical school.
We believe that the Safe Haven concept is being carried forward by students into their medical training and hopefully into their careers. We heard recently from year III faculty that they were asked by students whether they had adopted the Safe Haven concept? When did it meet and how could they get in touch about meetings?
The second session shows the middle interview with Morrie Schwartz. The presentation to the students is related primarily to grieving and how it can be helped and facilitated. Our discussion is led by four experts - a hematologist-oncologist (who deals with many types of malignancy,) the director of bereavement for a hospice, a nurse who has been involved for years in meeting with patients and families and finally a nurse who has been associated with emergent care and helicopter air care for many years. Their presentations always generate a lot of discussion. We present the original work of Kubler-Ross, and since there is not enough time to discuss it in depth we do make it clear that there has been a lot of progress in the 20 years since "On Death and Dying," was published. We also emphasize that the steps described are not sequential, and as Kubler-Ross also points out repeatedly, people often recycle and get "stuck in the groove." This year we added a discussion of grieving that frequently occurs when one has to deal with a sudden and traumatic accident, or with a severely and permanently handicapped child.
The final session deals with AIDS, both here and in the United States and elsewhere, especially in Africa where the numbers are difficult to comprehend, and the problems are nearly all of different orders of magnitude. Previously, our presentations were helped by parents who had lost a child who died from AIDS, dramatically and inexorably, but that is not the usual kind of problem encountered nowadays, nor is there the social upheaval that so often used to occur. After discussion of the status of HIV and AIDS, in the USA and elsewhere there is a final discussion of the grief and guilt associated particularly with a suicide in the family.
Timing: Students are taken aback when they are told in the first week of the first year of medical school that they must come to terms with their own mortality before they can hope to deal effectively with the deaths of their own patients. By their own account, throughout medical school our students confront communicating with their patients, trying to help them to face their own fate and aid their families to make losing them more understandable and bearable. Students, patients and families also have to try to develop an understanding and a consensus about Living Wills, Do Not Resuscitate and other aspects of the dying process that cause strife and argument between members of the family. This strife is often intense and comes as a shock to some of the students, and to patients that their families quite often may have heated arguments as the patient's death comes closer and all the details have not been uniformly acceptable.
Timing is critical and in the only year that the course was scheduled for January, instead of September, students had already acquired a layer of sophistication and protective covering, presumable from their contacts with other first year courses. The layer may not have been very thick, but it did make it more difficult to get students to stop and consider some of the ideas we presented about death and grieving. We realize that these are topics to which there is a built-in resistance, sometimes from the families of origin, from local churches and in a population as a whole. Death, dying and grieving are discussed only in a small fraction of American families - about 25% the literature suggests, and in that regard our student families tend to run under 20%. This is a message we have to repeat to the students frequently. In addition, by January students are beginning to settle into the routine of rationing and focussing their time, pacing their activities to match the inexorable progression of examinations. Asking them to volunteer for extra sessions in January, with experts on death and grieving, got much less response than we got in September. As mentioned above, we have had increasing difficulty in recruiting professionals, of any type, to volunteer their time to work with one or two students, more so in January than in September.
Facilitators: The other important element, and probably the most influential, is the quality of the small group facilitators and their ability to establish rapport with students. Their talents and dedication are most admirable. Almost without exception we have to call on the people who already have full schedules. Their willingness and commitment are also most impressive, probably because they value what they do very highly and place an equally high importance on sharing their knowledge and enthusiasm with other students, even though most of the facilitators have no academic appointment. Supporting this interpretation is the fact that in all the years I have had to ask and persuade people to assist me in teaching various areas of medicine or technology, I have never had so many of them thank me for giving them the privilege of participating in something so interesting and so important. The facilitators are nurses, social workers, physicians, priests and other types of teachers and counselors. The students and I owe them a very real and sincere debt of gratitude.
Relevance: With so little time available it is critical to focus on issues which will be of great importance in clinical practice later. Starting in the first year gives the ideas we plant more time to grow and mature, even through we do not expect to teach our students how to perform the skills we mention. There has been one notable exception to this, namely how to talk to those who have lost, or are about to lose a close friend or family member. We have been emphasizing that the idea of "what to say," is much less important than trying to learn "how to listen." Since we started that approach we have been thanked a number of times by students who have been in that position, were able to listen empathetically and were thanked warmly for "helping so much." This gives the students a boost in their morale to discover that even in their first year they can help.
Our course questionnaire answers, and members of the College's counseling services agree, that the most common cause of academic difficulty in the first year is suffering a loss. This may be the death of a parent, sibling or close friend, but more commonly (and its importance is not always fully appreciated) is the loss of a "significant other." This is particularly true when the student has left home for the first time; and loses another important source of support as well.
Writing Skills: Another thing we have learned is that medical students write much better than we feared they might after all the discussion about (lack of) standards in school, and decreasing emphasis on composition as a learning or evaluation tool. There was also a perception that students who have been prepared so thoroughly and rigorously for multiple choice examinations would be unwilling to cooperate with our choice of the grading method. In the first couple of years we heard a few complaints about the essay requirement but these were mostly due to uncertainty about what we were really trying to do. We were really as relaxed about subject-matter as we proclaimed? The students are now really ready to accept that we are indeed relaxed, but not to the point of accepting a paper which shows little or no sign of interest or application.
Rather than giving a failing grade - we managed to persuade the powers-that-be that this course should be "Pass/Fail." we have had conversations with a few students each year, suggesting that an expanded and modified version would be appropriate. So far this has worked.
Stress: We have a continuing concern that a course which forces students to consider things with which they may not have had any contact or experience, or not even have heard discussed, might be too traumatic. We were even more concerned about students who had suffered a loss with which they had not yet come to terms. It would not have to be a recent loss or experience, though recent loss does appear to cause more severe reactions, to judge by the essays. Fortunately this has not turned out to be much of a problem. A number have said in one way or another that while writing the paper was stressful and they wondered if they could finish it, they did manage to do so. Many found that the final effect was beneficial, some even called it "therapeutic," or "cathartic." A number have asked for assistance as a result of memories and feelings stirred up by their choice of topic. Only one student was unable to complete the essay assignment, although she tried a number of times. Her father had died just before the start of the academic year, and she had to fly home for the funeral. We told her it was not essential to complete the essay assignment. She kept trying, unsuccessfully, but there was a good outcome. She volunteered to address the entering class the next year, and did so for three years. The impact in all three years was very positive. She was held to be one of the best features of our course, but unfortunately for us she left town for a very desirable position.
"Trickle Up" Throughout development of this course and ongoing literature searches, I have begun to realize that there is a fundamental difference in teaching courses which run contrary to local and national attitudes about the subject matter. I use the phrase "trickle up" to emphasize that when students encounter such difficult and emotionally loaded topics in clinical settings two or three years later, and ask questions of the faculty and staff, it assists both students and staff to re-examine the issues and their underlying belief systems. For example, if a new issue is going to be discussed and students have no fixed pro or con attitude to the subject matter (such as abortion, contraception, discrimination and homosexuality) description and discussion are routine and relatively trouble-free. On the other hand if emotionally-loaded issues are to be discussed (such as death, Do Not Resuscitate orders, assisted death) it has to be recognized that many students have been taught for all their lives, or nearly so, by family peers, church, radio and television that one or more of those issues are against logic, ethics, and/or religion. A great deal of time and effort will have to be expended to encourage reassessment of issues and underlying beliefs. This is especially true when medical faculty, nurses and older staff, are unwilling to discuss alternatives, and are even willing to act against the laws of the land.
When we introduced the teaching of Medical Ethics at the beginning of the 1980's we did not find (as we had hoped and expected) that a wave of ethical discussion and subsequent conversion to appropriate behavior by professional practitioners would move upward with the classes of students. I do not know what difference in time is needed between teaching and persuading people to consider and adopt conventional, rather than controversial subjects. I have observed that there is a significant delay before controversial ideas are accepted and adopted (if they are at all.)
We hope this book will be of interest and benefit to medical students and staff in Cincinnati and elsewhere. I have been told by a number of people that reading material which has been written by teachers and students sometimes helps to stimulate thinking and reassessment more effectively, because of the different perspectives.
1) I remember vividly my first encounter with "death". I must have been about 11 years old when I came home from school to find relatives I hadn't seen in a long time in the house. I knew immediately something was wrong. I ran to my parent's bedroom and found my mother in tears, my grandmother was with her but not my father and my first thought was that something bad had happened to him. I asked her for my father and she said he was fine and added that my Aunt Joyce was dead.
How could she be dead? I had just seen her in the hospital the evening before and she was fine. She even promised to let me take care of her baby when she was born. She had been trying for over ten years to have a child and after 7 miscarriages her dream was finally coming true. My nana then explained that she had died on the surgery table, something went wrong and the doctors could not help her, she also said my little cousin was in NICU and that she was going to be okay. I remember being sent to my room. I was angry and confused, how could my favorite aunt be dead? It just seemed so unfair, she had so much to live for and I felt betrayed.
The next few days seemed to go on forever. People kept coming and going out of our house, all kinds of traditional rituals were performed in the house and all kinds of arrangements had to be made. The one I found most interesting was that since she was my grandparents' first child to pass away her funeral had to be within 7 days to prevent the spirit of death from coming to stay permanently. I was pretty upset when I was told I couldn't go to her burial or her funeral gathering. I was too young. I was even more upset when I found out my grandma and my aunt's husband couldn't go as well. The explanation, some kind of ritual or tradition forbade them from doing so. All kinds of weird things were done in the house, they left food out for her spirit each night (this was to go on for 40 days) since she had been living with us in the last few weeks prior to her death. Every morning my great grand aunt, the matriarch of the family had to sit in the room she slept in case she came back and needed to pass some information to someone in the family. Her husband had to be barefoot for 12 days (even when he was out of the house), in the spirit he was still walking her to some place between here and the other side. At all times he had to have someone with him, even when he went to the bathroom. This way her spirit could be stopped from snatching him over to the other side, when it was time for his spirit to turn back. The list of traditions and rituals that had to be followed goes on and on to this day.
I went with my 2 other aunts to her house when they went to pick up a few items to bury her with. They wanted to be sure she would have all the essentials on the other side they said. They took her favorite outfit, some make up, jewelry, kitchen utensils, her painting brushes, shoes, and money from her safe, linens etc. Her burial was early that Saturday morning and the funeral gathering followed that afternoon.
It was a big gathering held outdoors in a local park. There was traditional drumming and dancing and as expected even more rituals to say a final farewell to her. By that Sunday life was almost back to normal, most of the guests had left, my uncle was back in their house and I went to see my cousin for the first time. She looked so tiny and frail and I wondered if she had any clue as to what had just gone on in our family. I was still digesting some of the events that had transpired in the last couple of days. In addition to our family's loss I talked about what would happen if one of us were to die. I think we all agreed on the fact that we didn't want a replay of Aunt Joyce's death and the events thereafter, but convincing our extended family of the same thing was almost unheard of.
I have lost other relatives since then and I think I have been able to process their deaths a little easier. My "sister" has lived with us since she left the hospital. Sometimes I think I am looking at her mother. Over the years having her around has in some way made up for the loss of my aunt. Her mother is always remembered on her birthday, it is a family "ritual" now. I still think about her and wonder sometimes what she would be like if she were still living. I think the big lesson for me was that life still goes on. Death gives us a unique opportunity to celebrate the lives of our loved ones, it is a means to filter out the bad things and keep the good memories we have of them even as we continue to live.
2) It was a beautiful autumn day with white billowing clouds and a gentle breeze rustling the kaleidoscope of leaves. The air was full of robust aroma of fall. It was a perfect day for the upcoming ceremony. As I approached the church, I noticed that the parking lot was overflowing and that the auxiliary parking lot was quickly filling. After parking my car and checking my tie, I joined the large group of people gathering in front of the church waiting to enter. There, I spoke with many friends and acquaintances that I had not seen in over a year since returning to school. It was nice to catch-up with them. A few people had been promoted or changed jobs while others had more personal changes such as expecting a new baby. Once the line had progressed so that I was within the church, I quickly entered a pew and waited for the ceremony to begin while enjoying the beautiful music provided by a string quartet. The ceremony was perfect and progressed just as Eric and Jill had planned. Afterwards, the key individuals left the altar and quickly departed to the receiving room while a long line formed to meet the family. I took my place within the line, talking with several of my former co-workers as we waited. I, as well as many of those around me, commented that it was one of the most beautiful ceremonies we had ever attended. It was very moving, filled with both joyous and poignant moments. In fact, it was very much how we would want ours to be. Quite a spectacular wedding you might say, but you would be wrong. Rather, the special occasion was the funeral of my friend, Eric.
Many might find this attitude to be callous and insensitive. I disagree. Allow me to take you back four months prior to the funeral to June of 1995 and tell the story of a truly wonderful and brave man and his family. It was about three o'clock in the afternoon when an old college friend called to talk. We spoke of the usual thing such as how his MBA classes were going and at what stage I was in my summer project of finishing the basement. However, I knew that something was not right due to his depressed tone. As I was about to ask him what was wrong, he asked, "have you spoken to Eric recently?" "No, not in a few months. Why?" "Well, you may want to give him a call. He was diagnosed with pancreatic cancer and was given approximately six months to live." My initial reaction was that he must have been mistaken. Eric was only thirty-four years old and in excellent shape. He worked out every day, watched what he ate, and did not smoke. It seemed impossible! In fact, it was just three months prior that we got together to go for a long run, and Eric spoke of how he was stepping up his training so that he could do a few more triathlons that year. That's when I decided that I was going to give him a call to find out the reality of his condition.
As we spoke, my suspicions that Eric was fine were being confirmed at least initially. Eric asked about my wife and two dogs, how school was going and when medical school would actually begin. He still wanted to know all the details of my life just as when he was my mentor at work.
He added that he heard that I was finishing my basement and said he wanted to come over to see it. He was the same old Eric. Soon his tone changed, and I was proven wrong. "Sean, I don't know if you've heard, but I have pancreatic cancer. My doctor says that I probably have less than six months to live, but they can never really tell how long it will be." His words struck deep within me. Questions began flooding into my mind. How could he be so calm? What was going to happen to Jill and the boys? How were they taking it? How was he taking it? We spoke for about fifteen minutes when he said that he needed to leave. As we said good-bye, we set a time for me to come and see him the following week. Afterwards, his words settled in. I did not want to believe that my friend, my prior mentor, my workout buddy, was ill and dying. It was almost too much for me to comprehend.
As agreed, I saw him the following week. He looked a little thinner and not as vivacious, but he did not look like someone who was expected to die shortly. As we spoke, he told me that the cancer caught him by surprise. He originally went to his physician with minor complaints. He assumed that it was some kind of flu or other small problem that could be easily fixed with medication or minor surgery at the very, very worst. After he was told that it was cancer, he was shocked and thought that the physician was wrong. When a second physician concurred, he knew that he had cancer and could not deny it any longer. Though theoretically easy to accept, he initially was angry and felt resentment. He was being robbed of his family and his life. That night Eric took the difficult task of telling his wife, Jill. There was not much to be said, so they just held each other as their emotions poured out in tears.
Over the next several days, Eric and Jill moved through the stages of denial and anger. They went back to the doctor to see if there was something, which could give him more time. Not much could be done however due to the cancer's progressive state. They then turned to God and asked for support and guidance. At this point, they moved past the bargaining stage into acceptance. They realized that they had been blessed with a wonderful life together, and they did not want his cancer to overshadow and diminish their lives. He fully realized that not much could be done to treat his cancer and that his time was limited. They simply wanted to enjoy the time remaining and use it effectively. He insisted that Jill continue to earn her master's degree in education and that his boys, ages six and eight, stay in school. He did not want to disrupt their lives. It was important to him that his family prepare themselves for when he would no longer be with them. As before, Eric continued to spend his evenings and weekends with his family and close friends, making sure that they knew that he loved them and cared for them. As his condition worsened and the pain became more intense, Eric was offered various painkillers of increasing strength. However, he decided not to use painkillers, as they tended to compromise his mental faculties. He wanted to be completely alert and receptive given the limited time with his family.
He used the time that his family was at school or elsewhere to handle legal and business matters such as trusts, wills, and insurance benefits so that they would not be a concern for his family following his death. Additionally, Eric spent the days recording his thoughts, emotions, and intentions on tape, which were later transcribed into letters, regarding the major events in the lives of Jill and the boys that he would miss. Though he would not be physically present at these times, he wished to be a part of them through his words. Lastly and certainly not least importantly, he sat down with his boys and explained his cancer to them and what they could expect over the next months. He told them that he loved them and always would. He said that although he would not be seen, he would always be with them. He also was sure to let them know that they needed to move forward with their lives after he was gone. Eric essentially used the four months that he had left to help prepare those whom he loved for when he would no longer be physically there with them. Despite his personal suffering, he worked to soothe the pain and anguish that others were and would be feeling.
The reason that I am telling Eric's story is that I find it to be remarkable and inspiring. During his thirty-four years, Eric touched the lives of many people through his volunteer efforts, professional life and numerous social contacts. He was always a caring, compassionate individual who worked very diligently to assist others. Additionally, Eric and Jill's outlook throughout the four-month period, and Jill's thereafter, reaffirmed the strength of their characters. Their courage and the way with which they dealt with his cancer were truly exceptional, and I have nothing but the greatest respect for both of them.
Dr. Hensel's article, "Given the Choice," describes how he came to the decision that he would rather die a prolonged, painful death rather than an immediate, painless death so that he might help prepare his family and friends. Given my experience with Eric, I would make the same choice if given the opportunity to choose. Though my physical suffering would be greater in this situation, I feel that the benefits of being able to make amends with others and properly prepare my loved ones for my death would greatly outweigh this pain. I would ask God to give me the strength and conviction, which Eric displayed, so that I could persevere through such an ordeal.
I, as well as many others, truly miss Eric. I know that my life is richer for having known him for the five years that we were able to share. If given the choice of not knowing him and thereby not experiencing his loss or knowing him and experiencing his loss, I would not hesitate to form our friendship once again. Though losing him was sad, I am reminded of the great person Eric was, and I refuse to allow his accomplishments to be overshadowed by the cancer which took his life. Even in death, Eric continues to serve as a role model for me and has a positive impact on my life as well as the lives of many others. I therefore view his funeral as a culmination of his life's work and a tribute to him.
3) Losing a baby through miscarriage was by far the most painful experience of my life. I had always wanted children but had delayed becoming pregnant for several reasons. Finally, the time was right and my husband and I decided to try. I became pregnant soon after that decision and was ecstatic. I decided not to tell anyone until I was ready for maternity clothes. At the time, I was employed in a male-dominated field and I was up for promotion. I had heard too many remarks about how young women couldn't do the job as well because of "divided loyalties." Other women with children had struggled and several had to at least threaten a sexual discrimination suit to get promoted. I decided that I'd show them! I would be the perfect example of a working mother, not letting my pregnancy interfere with my job.
At work I was the model of efficiency while at home, I pored over baby books and embryology texts. Each day I charted my fetus's progress in terms of development. I rubbed and patted my stomach in the morning as I was waking and sleepily imaged what she might look like. I always imagined her to be female and even nicknamed her "Phoebe the Fetus."
One day, when I was almost three months pregnant, I decided to tell my boss because we were planning projects for the upcoming year. I wanted to do the right thing professionally and let him know that I would be unavailable around the time of my due date. So, one Thursday, with trepidation, I marched into his office and made my announcement. I could tell that he was genuinely happy for me, but he agreed that it was best to keep the news between us for a little while. The next morning I began to bleed heavily.
I called my doctor and arranged to meet her in Labor and Delivery at University Hospital. I hung up and called my neighbor to ask her to take care of my dog because I didn't know when I would be home. Looking back, I would say I was in denial. It never occurred to me to call my husband! My neighbor was a woman who had suffered the death of full-term twins and had two subsequent difficult, though successful, pregnancies. She knew something was wrong and insisted on driving me to the hospital. However, in a strange way, having her along made me work hard to protect her from whatever would happen. I was nearly cheerful in L&D! I put up a strong front for the receptionist, the resident who took my history, and the fellow who did the ultrasound.
I followed the ultrasound in a detached way, looking for a heartbeat. I looked at the small, dark oval on the ultrasound and knew. I felt sorry for the poor resident who had to tell this woman that her fetus was dead. I wondered about protocol - would she tell me or wait for my doctor to arrive? I said, to help them, "there is no heartbeat." One resident mumbled something about wanting to wait for someone more experienced with ultrasound to take another look. They left me alone and I felt relieved that I could cry at last.
My doctor arrived and told me that she had five miscarriages but now had three healthy children. She also told me about the double scotch she had after the first miscarriage and D&C. I loved her for that! She was so full of hope as she talked about the future. She did the D&C within the hour and by then, my husband was there. As this was a Friday, I had the weekend at home to take it easy and was back at work the following Monday. My days, initially full of optimism for the future soon became a routine. Wake up, cry, shower, and go to work. I even got up early to have more time to cry! Mornings were the worst as I had always enjoyed my "playtime" with Phoebe. Cruelly, my body still felt pregnant for the first several weeks. Some mornings, I would forget that I wasn't pregnant until I was fully awake - a double insult to my fragile emotions.
Of course, at work no one except my boss knew. I was exhausted at the end of each day with the effort of keeping my grief to myself. I had not told anyone at my church, though I was a member of the choir. My miscarriage occurred the first week in December and we were rehearsing Christmas music - lots of lullabies for the Christ child. I would have no baby to cradle in my arms. I sobbed quietly as I bent my head during prayers.
I look back and wonder why I felt that I could not tell anyone; even this group of caring people that I knew would support me. I think I was afraid that my grief would overwhelm me completely if I didn't try to keep it under control inside me. I know now that you must give grief its due. By trying to keep it inside, it did a lot of internal damage trying to get out. I made it through Christmas in a haze of not sleeping, not eating and depression. By January I was physically wrecked. I allowed myself time off from work to recuperate. After all, this was now a physical illness.
I was beginning to believe that I would never heal spiritually. I went to talk to a friend of mine, a priest. It struck me that there wasn't even a ritual in my church for my situation. Funerals, after all, were for children, not "the unborn." My priest looked at me in astonishment when I told him that I didn't understand why I was still so sad and depressed. It had only been four weeks since the miscarriage. He said to me, "but your baby just died!" That was it. My 3-month-old fetus, to me, had been a baby, idealized from the beginning full of promise. It was OK to feel this way about a baby. I can't say that things were rosy from that moment on, but I had a starting place for my grieving. I went to Spring Grove Cemetery, to the children's section, and cried for all those babies and for their mothers. I cried for my baby. I cried for me.
Being a scientist and an analytical type of person, I can't let myself write about this experience without commenting on what it has taught me about death and grieving. I don't think mourning is a linear process of denial, bargaining. Anger, etc. and having read On Death and Dying many years ago, it wasn't my impression that Kubler-Ross thought so, either. For me, grief comes in waves, gradually diminishing till the memories can be recalled, reflected on, and then put back in their place.
Writing about and reliving this experience has been painful, but the intensity is perhaps one-tenth what it was two years ago. Also, loss is very personal. Meaning and the individual experiencing it determines depth. As a society, we can inadvertely place restrictions on what, why and how we grieve. I hope being aware of this, I will better be able to help my future patients cope with their losses.
4) The time was 7 a.m. on Christmas morning, my favorite day of the year. As energetically as a 10-year old boy wanting to dig into his Christmas presents can be. I sprang out of bed and sprinted into my parent's room. The next five minutes involved waking up the rest of my family so everyone can go down and open presents. The family custom was for my grandparents to stay with us Christmas Eve and watch us as we open our presents. Therefore, grandma and grandpa had no chance of escaping the shaking hands of an excited 10 year old boy who wanted everyone down stairs to celebrate Christmas. The rest of the morning progressed in the usual manner as my father and grandfather took pictures of my two brothers and the opening presents while my mother and grandmother watched the kitchen as they sipped their coffee. After an exhausting morning of opening presents my parents decided it was time for the boys to clean up and take a shower. My grandparents shared the same idea but they wanted to go home to shower. After a number of thank you's, hugs, and kisses, they went home. A half an hour later we got a call that would throw a wrench in the rest of our Christmas Day plans.
In the middle of picking up after me, my father picked up the ringing telephone. My grandmother was on the line and she was hysterical. She said that my grandfather had just collapsed in the kitchen and she thought he was having a heart attack. The next two hours were kind of a blur. My father and two of my uncles went to my grandparent's house to take care of my grandmother and take her to the hospital. Unfortunately, it was my mother's job to clean up the three kids and meet everyone at the hospital. Although my two little brothers were oblivious of the crisis going on, I knew something was very wrong with grandpa. We spent two hours in that hospital and I remember every second of it as if it was yesterday. The doctor came out to talk to us and tell us what had happened to my grandfather. He informed my family that my grandfather had a massive heart attack and had died before he even hit the floor. It was completely devastating to my family. There were twenty-five sobbing adults in that emergency room and it was not a pretty sight. Being only ten, I kind of took my role as babysitter for my two younger brothers and younger cousins. This allowed me to watch everything from a distance. As the doctor entered the waiting room in the ER, I am sure he could tell he was getting into a hairy situation. He spent close to thirty minutes with my parents and relatives explaining everything that had happened to my grandpa and answered numerous questions that were being asked from every direction. I kind of shrugged off this behavior as normal for a physician and didn't think a whole lot of it. I guess I was more upset over my grandfather. It wasn't until our death, dying, and grieving class that I realized the significance of what happened that Christmas day.
As a 10 year old, my realization of the impact my grandfather's death had on our family was correct. It was completely devastating and I could see this. Something that I had not put much thought into was the impact that the ER doctor had on our family. Here was a man that had to tell a room full of adults that their husband/father/grandfather was dead. I can't even imagine what that must have been like. Especially after he broke the news and twenty-five or so adults broke down into tears. After our first death, dying and grieving session I called my father and talked to him about that Doctor and what he had said and done. My father had nothing but praise for the man. Among some of the adjectives he used to describe him were caring, thoughtful, empathetic, understanding, kind, helpful, and respectful. He also described how my family would have had a harder time dealing with this situation if this doctor had been pushy and not understanding. It was at this point that I was just beginning to realize what dealing with death as a physician was going to be like.
During the Death, Dying and Grieving sessions we discussed a lot of topics relating to how different people have dealt with death and how physicians should deal with patient death. I had never really thought about my grandfather's death from the physician's perspective. I guess that I somehow assumed that all doctors would treat their patients how my family had been treated. This class showed me that this was not the case and I was really going to have to work on delivering this type of news. Would I be able to compose myself if I had to walk into a room full of thirty people and tell them that their loved one had passed away? Another question was would I be able to deal with twenty minutes of hysteria and questions that would follow this type of news? I can definitely tell you that I was blown away at first. Surely at some time during my medical career I was going to be faced with a situation like this. Although I always felt that I could be a compassionate and caring physician, the question of could I deal with something like this arose in my head? I knew I was an emotional person and I wasn't sure how I would hold up in the real world. The predominant feeling I felt at the beginning of this course was definitely a feeling of inadequacy. I really didn't know anything about dealing with death. The stages of grieving like anger, denial, and depression were foreign to me. Fortunately, I was able to attend each session in an attempt to understand what it would be like to deal with people who are grieving. Although I'm ashamed to say it, I assumed that dealing with grieving families wouldn't be that difficult. I can only thank the people in charge of this series of lectures for opening my eyes to what we will be facing in the future. I am very confident that I would have been blown away the first time I had encountered death, dying and grieving as a physician and it would have been devastating. Educating someone about this situation they will face as a doctor is the easy part and I felt that this was done well.
I am of the opinion that each student has to take the information they learn and resolve their particular issues on their own. I am by no means ready to deal with this type of situation but I am working on it.
After reading the collection of essays, Must I Think About Death? Now? I felt I wanted to write about a personal event. Along with this, I wanted to show how this class changed my view of this event. I also felt it was necessary to show how this course will affect my life as a medical student and as a doctor. It helped me to realize that being able to deal with a sobbing group of people when their husband/father/grandfather dies was a real life situation I was going to face. Overall, this course brought the realization that I was going to have to change my way of thinking to help prepare me for death, dying, and grieving and it was going to take some serious practice.
5) While reading the required book for my Death and Grieving class, I felt like I had experienced a relationship very similar to a young lady who had authored one of the essays. She, like myself, had a grandfather who was very prominent in her upbringing. Both of our grandfathers actively filled the role of a parent who was no longer present. Although the beginning of our stories are very similar, how we dealt with the end of this very special relationship is quite different.
My relationship with my grandfather ended the day after I took my MCAT for medical school. Grandpa was 99 ½ years old when he died. Limited in his ability to walk, and requiring a walker, he still lived a very active life. He enjoyed reading, listening to music, going to church, spending time with his family, and drinking a Manhattan every night before supper. He had gone out to supper with two of his children and my son 3 days prior to his death.
I remember fearing the event of his death for many years. Starting around the time when he was 90 years old I would always think that this would be the last birthday, the last Christmas, the last Easter, etc… It was, like the author said, "the worst thing in the world." We had four major holidays in our family: Christmas, Easter, Thanksgiving and Grandpa's birthday. Every time my mother left a message to call home with no further explanation, it sent chills down my spine; I would think this would be the call that he had died. Any unexpected visit from my mother was because she didn't want to tell me over the phone that he had died.
When Grandpa was 95 he walked me down the aisle at my wedding. He danced more than I did at the reception. He looked handsome, proud, and full of life in his tuxedo. Then, that summer, he had his first brush with death. One night in July, while lying in bed, he remembered he had forgotten to refrigerate a peach pie he had baked that day. While returning to his bedroom from the kitchen, he mistook the stair well for the hallway, and fell down the stairs. We were blessed, and he was not seriously hurt. Later that fall his walking became less steady and he experienced some weakness on one side. He went to see a doctor, and was told that he had some slow bleeding in his head. If the buildup of blood were not removed, he would most likely die within two weeks. I still vividly remember him sitting in his room with my mother my aunt and myself as he asked us if he should have the surgery. Many times prior to this he made comments about his death. Statements like "We should spend my money now, I can't use it once I'm gone," and "I'm not getting any younger, I may not be around," when discussing future holidays were heard quite often. He had to decide if he wanted to have the operation, or quietly slip away. He decided to have the operation, and went to the hospital the next day where doctors drilled two holes in his head to remove the blood. There was no guarantee he would return, but least my grandfather had been given the opportunity to fight for his life.
Ultimately, his decision to have the surgery allowed him to attend one more wedding of a grandchild, and experience the joy of three more great-grandchildren.
I remember driving home the day before the MCAT exam and thinking if Grandpa became ill that night, I hoped no one would tell me until after the exam. I knew I would be unable to concentrate during the test. I was not home from the exam for more than an hour before the phone rang. It wasn't my mother like I had always imagined it would be, but my uncle. He wanted to know where my mother was; Grandpa had a stroke, and the life squad was on the way. The moment wasn't at all like I expected. I don't think you can ever know how you will respond to a bad situation before you are in one. I remember being very calm, telling my uncle that I would find my mother, and to make sure he had Grandpa's living will papers to prevent the life squad and emergency room from resuscitating him if he stopped breathing.
Sunday morning I went to visit him. He was no longer able to talk or open his eyes. His breathing was very labored, but I could feel him squeezing my hand. He waited until my mother arrived, and died 10 minutes later, quietly and peacefully taking his last breath as mass was being said on the television in the room. Again, just like the dreaded phone call, this moment was not nearly as bad as I expected. His death was the way I would have chosen for him to go. He had not suffered, and we had time to say goodbye to him and he to us. For a while I wondered why I was not more upset. Why did I not go through the stages of grieving that I had heard of before? Finally, I realized it was not his actual death that I was so anxious about, but the events surrounding his death. The thought of dying, the mystery of the event, and my own reaction were far scarier to me than the actual death. I am glad I remember his death with a sense of peace and serenity, and not with the anger and discontent that the author in the story had.
6) I remember my first day in the ER as if it was yesterday. The date was April 17, 1994. I was an ambitious undergraduate with aspirations on going to medical school some day. I had signed up with a local hospital to volunteer in their Emergency and Radiology Departments. It was something that I had looked forward to with great anticipation; finally here was the chance to experience medicine in all its glory and to see if this was really what I wanted to do with the rest of my life. Yet I had only thought about this excitement and the drama that I was going to experience and the lives that would be saved. Sure I knew that I was going to see pain and suffering, but death? I certainly was not ready for that. So when that first trauma pulled up to the door of the ER it was something that I was really not prepared for.
When the call first came over the intercom that trauma team one major was being activated a huge surge of adrenaline went through my body. This is what I had been waiting for; I was going to get to see "good stuff." Approximately five minutes after the activation had gone out, with all the doctors and nurses standing by, the doors suddenly burst open and in came the paramedic hurrying down the hallway with the trauma victim fighting for his life. He was an eighteen-year old who had been riding in a car with his best friend and their girlfriends. They had been speeding and had subsequently lost control of the car colliding head on with a telephone pole, at an estimated 80 miles per hour.
Between the continual screams of pain, the chirp as the x-ray machine was zapping pictures, and the constant hustle of the trauma team hustling about, all I could do was stand and stare at the spectacle before me. It was exciting and fascinating to see how the physicians and nurses were all so at ease in this time of extreme stress, yet I, to be honest, was a nervous wreck. I could not help but wonder about this young man who was lying on the table not knowing what was going on around him or that he was in danger of losing his life. What started to take hold of my thoughts even more, however, was that this patient was only a year or so younger than I was. For the first time I started to realize that I was not invincible and that this same situation could just as easily be occurring to me. There was no reason why that could not be me laying in the middle of a trauma room fighting for my life. This thought scared me.
The struggle to save this young man's life went on for about 25 minutes with the trauma team racing against the clock performing procedure after procedure. As this was my first day volunteering in the ER and also my first ever-actual witness of a trauma, I was not really allowed to do too much. On this day the duty asked of me by the nurses was to hold this young man's hand and comfort him as best I could during this traumatic time. Hold his hand, now where was the excitement or even usefulness in that I thought? At first I just stood there just holding his hand and not rally doing anything else to comfort him, but with each new procedure came the pressure of his hand squeezing mine as the pain became unbearable to him.
Slowly I started to see the usefulness in holding his hand; I was all the support he had at that moment.
As the trauma continued it became increasingly obvious that this young man was very lucky, not only was he going to live but luckier still he was going to have no major injuries that would affect him for the rest of his life. Thus slowly the trauma personnel, seeing their job done, began to file out the room and return to their other duties. Soon all that was left were several nurses, the ER physician, and myself. Yet for me the trauma was not over because my role was not over. What this patient did not know was that his best friend, whom he had been riding with, had not been so lucky and was in fact killed instantly in the crash. However, as a result of the crash the patient, in addition to his numerous broken bones and other ailments, had also suffered a concussion such that throughout most of the trauma he was confused and unable to comprehend what was happening at that moment or what had happened previously. Thus, repeatedly during the trauma he asked about his friend and each time he was told of his friend's death but because of his injuries he was unable to comprehend this. However, after a time his awareness and full mental capacities came back and with them so did the understanding that his friend had been killed.
I spent three years volunteering in the hospital's ER and was witness to many fatalities and traumas that were much worse than this one. Yet this one in particular I have never forgotten and I think for several reasons. Not only was this my first actual experience with a trauma, but it was the first time that I actually was forced to think about death and its meaning to me. I was not allowed to help out with any of the procedures that day but I did get to do something that I think was just as important and that was comforting to a patient that I had never met before. In fact when this young man finally did understand that his friend was dead, it was I who had just reminded him of it; and I was the one who helped him through that initial shock. Finally, I remember that trauma for one special reason, and that is, after it was all over, he and his family appreciated me enough to say thank you for being there and helping through that tough time, and that really meant a lot to me.
No, this young man was not killed in the car accident; he was lucky, his friend was not. He lost his best friend and I inherited the tough task of telling him the sad news. Thus, both of us experienced a loss that day, he directly with the death of his best friend and me indirectly with the loss of innocence that accompanied my first introduction to death - an experience that I will always remember.
7) The man walked into the emergency room with his wife and two sons. He complained of chest pain. After his triage, I escorted him to an exam room. We talked for a few moments before I showed him his gown and pulled his curtain. He and his family had just been at a restaurant having a celebration dinner. Earlier in the evening his youngest son had graduated high school. We spoke a while longer and he seemed to be a very likable gentleman. Within forty minutes this gentleman was dead.
Before starting medical school, I worked as an orderly in an emergency room. Being an orderly means that you basically do whatever anyone tells you to do. (Usually these are the jobs they do not want to do themselves.) While working as an orderly, I had seen dead bodies before. It was my job to take them to the morgue. This time was different. The other times, the people who died had been very old. They had all come to the hospital from nursing homes and were not lucid or even conscious before they died. This man was only forty-six years old, and he was perfectly lucid when he came in.
Shortly after he was hooked to the heart monitor its lines and beeps became erratic. Shortly after this happened, our patient lost consciousness. At this point all of the nurses and doctors left the other patients and converged to save a life. This is also the point where I felt totally helpless. I wanted to help, but I really did not have any medical knowledge to do so. Therefore, I tried to stay out of the way. Our patient was intubated and CPR was started. I tried to help when I could, by running blood gases or keeping correspondence with the family.
I remember when I first thought that this man was not going to live. It was when I heard his ribs break. The CPR had been going on for about ten minutes. The nurses had just switched positions due to one being tired. The incoming nurse's first couple of compressions broke the man's ribs. Also around this time, a blue color started creeping into our patient's face. This was the moment I realized that the man I had been talking to earlier, was going to die. Just then, the whole spectacle I had been watching seemed endless interesting and exciting. It is horrible to think of something like this as being exciting. I was so interested in medicine however, that any medical procedure excited me. This started out being the ultimate medical procedure saving someone's life. Once I realized that this procedure was going to be unsuccessful, the excitement was gone.
The doctors finally called the time of death. The crowd of nurses disappeared and the body had to be cleaned up so that the family could come in and view it. I guess I did have enough medical knowledge to do this job, because I was nominated (ordered rather.) I took out all of the IV's and cleaned the blood that drained from their puncture holes. The blood was not even red anymore; it had already started to turn black. I had to catch my tongue as I ripped out some of his chest hair while removing some tape. I had almost apologized to him.
He did not care however; he did not feel the pain. I finished by propping his head up on a clean pillow and covering him with a blanket. By the time this was done the blue color was gone from his face. I left and the family came in to see their loved one.
After the family left, our patient's original nurse and I put him into the body bag. I had to then take him to the morgue. It is always very odd taking a body to the morgue because everyone you pass can see the body bag. They all know exactly where you are going. Some people, even though they work in a hospital, noticeably steer clear of a person wheeling a dead body. The morgue is located in a very quiet and dimly lit section of the hospital. As I pushed the cadaver through this part of the hospital, I started to think. I remembered all of the stories I had heard about when people die. I recalled that people might hover over their bodies for some time after they die. This made me think that maybe my patient was watching me right now. Maybe he was watching me when I ripped the hair out of his chest. Perhaps I should have apologized after all. If this could somehow be true, then I was probably going to be the last person this man saw before he went on to another place (if there is another place.) All of these thoughts were going through my mind, so I did something that would have looked very strange to a bystander. In that deserted, dimly lit hallway I looked up, smiled and waved at the thin air above me.
The morgue was a cold place. There were many stretchers there, with body bags on each of them. The stretchers were not lined in an orderly way. As a matter of fact the room looked in total disarray. It seemed as if no one cared about this part of the hospital. It was as if the people bringing cadavers into the morgue were in such a hurry to get out of the room, that they stopped at the door, gave the stretcher a push, and left. I did not really feel like any patient belonged there. Everything else in that room was so dead. I know my patient was also dead, but it did not seem right. I was talking to this man one hour ago about his son, and now I was leaving him in a freezer with a bunch of cadavers. I closed the door and walked away.
I had not even known this man except for our brief conversation, so I had no real trouble coping with his death. I could accept that he died, but certain aspects about his death were unsettling. He died so quickly. As I stated before, the previous deaths I had witnessed had all been very old people. Everyone knew that they were going to die soon. This man's family had no idea that their husband/father would be dead by the end of the night. He was only forty-six years old. This was my first intimate experience with death, and it made me contemplate my own mortality a great deal.
8) …Today we had another session of Death and Dying and it was way different from the last one. They made us fill out a table with all of the things that were important to us and then had to imagine that we were dying of leukemia and just start crossing stuff off randomly. I managed to save Mom and Dad, and even when we traded papers Chris only crossed off my car and clothes. I know it was just an exercise, but for some reason, I still feel very sad. Why does this bother me so much? I would like to think that even if I was dying that I could not lose my family and friends but the lecturer said, "sometimes people withdraw because they can't deal with it." I thought of saving the grid, but seeing all the things I love with X's through them was not all that fun so I threw it away. Anyway…
Above is an excerpt from my personal journal, which I have included because it reflects my immediate reaction to what happened that day. I choose to discuss this particular class session as I learned more about myself and understanding patients during those three hours than in all other sessions combined. Even a month later, it remains very thought provoking.
I will readily admit that in my first few weeks as a medical student, the last thing that was on my mind was death, loss, or grieving, Instead, I was concentrating on meeting new people, delving into the basic sciences, and getting my bearings. After all, I was not a "real" doctor yet, so why must I learn how to handle patients and their grieving process when I don't even know how to take a medical history yet?
After the September 3, class, I had accepted the idea that it was important to learn about the stages of grieving so I could better understand and serve my patients. The second session however, was quite an eye-opener for me. Sure, learning about patients' reactions to death and dying was a piece of cake, but now I was being asked to examine my own feelings, attitudes, and values and I was at a loss to how the two were connected.
The exercise in which I filled out the grid with things that were important to me actually made me feel good in the beginning. I was more than willing to jot down that which I held dearest - my family, friends, photographs, or education and reflect on how happy my life was and how fortunate I was to have all the wonderful things I had listed. As I was walked through the story and forced randomly to cross items off the list, a number of strong feelings surfaced very rapidly. The most overwhelming feeling was one of sadness as I tried to imagine what my life would be like as the things I cherish just disappeared. Underlying this was fear, as I quickly realized that dying and suffering such losses could happen to me just as easily as the next person could.
After we had exchanged papers and someone else got to choose what was deleted from my life, additional feelings of helplessness, loss of control, and anger surfaced. No longer could I cross off the lowest priority items, such as my clothes or exercise. Not a relative stranger, who knew nothing about my values, or was making that choice. The person with whom I traded papers "went easy" on me and avoided the blocks containing my family, friends, or God, but in reality there is no guarantee that life will be as kind. When the exercise was finished, I found myself feeling guilty for having such sadness and frustration, as this was only an exercise for me, but there were other human beings to which a situation like this was really happening.
The lesson I learned from the session I believe, will be most helpful to me in my relationship with patients is the understanding of that fear of loss of control. How it defines the three crucial needs of a dying person: 1) relief from pain and suffering, 2) maintaining their personal dignity and self-governance, and 3) maintaining love and affection. In this article "How a Doctor Learned His Limits and Strengths," Dr. Richard Waltman discusses how many doctors are conditioned to view death of a patient as a mistake, which puts the emphasis on the physician rather than the patient. Instead, we should try to understand the patient's wishes and work with them to help them maintain control over their dying process. Ultimately, however, we cannot truly be effective at this until we have confronted and become comfortable with our feelings about our own death. Indeed, this is a formidable task which cannot be completed within the three-week span of one medical school course, but rather a lifetime process of feeling, learning, and growing which will make us better persons, and better physicians. I stand ready to meet this challenge, and am grateful for the Death, Dying and Grieving segment of ICP for making me take the first step.
9) January 5, 1983, I remember that morning as if it was yesterday. I came downstairs to get ready for school and my grandmother was standing in the kitchen doing dishes. At the sight of my grandmother, I knew that mom had gone into labor. I was so excited and went to school that day hoping that she would have a boy. When I came home from school my grandmother said that my mom did have a boy, but I could not go see her or my brother yet. When I came home from school the following day, my grandmother had packed some of my sisters' and my things into a bag and brought us over to my aunt's house. I played with my cousin, ate dinner, and as my cousin and I were watching TV, we saw my mom on the news.
"And next, here is the new Care-Flight Unit of Miami Valley Hospital transporting Linda to the hospital's new trauma center. She is in critical condition." Then, the newscaster discussed some aspect of the new facilities. Granted, I was only nine years old but I did understand what critical condition meant. My aunt walked in, rushed over to the television, and turned it off. I ran to get my older sister and to tell her what I had seen.
My mother had "a few complications," with the delivery of her sixth child, my only brother, Ted. Upon her release from the hospital eleven months and sixteen days following delivery, she came home to a renovated living room and turned hospital room. Even though we had visited her weekly since her admittance; she still could not remember which kid was which, nor our names. Fortunately, we were patient teachers. Also, since we were learning reading and math in school, the nurses put my older sister and me in charge of teaching these, too. Even though we could teach my mom to read, write, and recognize us, we could not teach her who she was, or who we were, before January 5, 1983. I guess the date of death of my mom would be that same day.
I never had a chance to say good-bye. I cannot even remember the last time I saw her before delivery. I only remember my grandmother in the kitchen. I cannot remember my mom kissing me goodnight on the night preceding her delivery. I wish that I could. Although my mother is still physically alive, the mom that I knew up to that point in my life was not. She died.
As with any death, I went through a form of denial. The problem was that physically she was still alive. I kept hoping for her to remember something, anything about my early childhood or even her wedding. You see I had watched soap operas with my baby-sitter. People always regain their memories on Days of Our Lives. Unfortunately, my mother still has not.
During the year that my mom was hospitalized, I used to wish that she would die. I did not like living at my aunt's house. I knew that if she died, my dad could leave the hospital and take us back to our own home with our warm beds. That woman in the hospital did not know me. I always had to introduce myself to her. Then as if that was not upsetting enough to a nine year old, I had to kiss her scaly lips when we left. Sometimes I really hated that woman.
I hated the work that accompanied her. I wanted my original mom back. I felt so guilty about hating my mom. I did not know what to do. I confided in my cousin about how I felt. She just looked at me dumbstruck. Two weeks later, I told my aunt how I felt, I wished that my mom would just die. That was the last time I was honest with her. She punished me dearly for how I felt and especially for admitting it. I remember feeling absolutely lost. I had no one to turn to. No one could fix this, anyone.
I was not thankful for my mom's survival. Everyone kept telling me how lucky I was that she was alive. "That Linda, she is some fighter." I did not care. These people did not know what it was like to live my daily routine. I had a friend in a similar situation in which her grandmother needed significant care from her and her family. She and I would talk about how we wanted them to be gone. When her grandmother did die, my friend was relieved; yet, her guilt did not subside. Now, she felt guilty for not grieving enough following the funeral. Some deaths just are not as sad as others are.
Acceptance came through maturation and time. As I mentioned earlier, I realized that my mom would never remember my early childhood. I have grown to accept my new mom and love her for all that she offers. She still has a few lingering complications, yet she can still listen and give advice. Along with this acceptance, I still grieve sometimes. When I was nine, I learned to cook, clean, iron, take care of myself, and take care of my two younger sisters. To this day, my childhood is divided according to my mom's illness. Old mom versus new mom time. I know my life would have been significantly different if my mom had actually died. Still, I would not be who I am today if she had.
I have been to many funerals in my life, yet none of these true deaths have affected me more than my experiences with my mom. I can see others go through similar feelings that I did denial, anger, bargaining, depression, and acceptance. Hopefully for them, they learn about death as well as life in the process.
The only way to be comfortable with death is to experience it. You cannot determine the facts of a death and punch them in some formula that prints out a list of all the right things to say. Sometimes there is nothing to say. Dealing with death comes from ability. The ability to see each death uniquely and treat it accordingly. As a doctor, what is said is not as important as how it is said, with both your words and your actions.
10) Five years ago, I truly experienced death for the first time. I had previously lost three grandparents, however, they were old, and I was very young. I loved them very much and grieved their loss. This time was different. I grieved the loss of a friend, but more significantly, I was introduced to death not merely as the end of life, but as a force whose power extends well beyond the grave.
As I sat in the funeral parlor, listening to the first verse of "In this Very Room," I recalled my personal memories of Fred. He had been my next-door neighbor while I was growing up. Fred, however meant much more to me, he was like a second father. I remembered specifically him butterfly-bandaging my head when I rode my Big wheel down the steps. He always had a smile on his face and a kind word to say. This is the way I will always remember Fred.
Some years after Fred and his family had moved away, my parents told me he had developed cancer. Cancer represented nothing new, both my grandfathers died from lung cancer. Still the news of his disease had hit my family hard. He was just a few years older than my Dad was! When I inquired as to the type of cancer he had, mom shrugged her shoulders. All she could tell me was that he had refused treatment. Why? I had wondered. My question remained unanswered for another year.
Just after Christmas of the following year, Fred's condition took a turn for the worse. His time was running out. Doctors predicted he would live for no more than a month. My parents visited him frequently. I, on the other hand, had not seen him for some time. One evening at Fred's request, my brother and I accompanied my parents on their visit. So, that night the family piled in the car and headed to Fred's house. We pulled into the driveway a little after six. I timidly walked up to the door following a few paces behind my younger brother, Jon. Mom knocked on the door. Maybe Fred and Nancy had forgotten their invitation to us and had left. I secretly hoped they had. I was very nervous and my palms were sweating. I have an extremely difficult time trying to talk to someone who is dying. What do I say? What if it is the wrong thing and I offend him?
Moments after the knock, Nancy opened the door. "Hi guys," she said with what appeared to be a genuine smile. How could she smile? Her husband was dying. My family and I filed through the door and into the entranceway. Nancy took our coats and hung them up in the hall closet. My apprehension grew steadily as the time to see Fred approached.
The five of us stepped into the living room, which was right off the entranceway. Fred was seated on a burgundy couch. On his lap was his small dog. Cricket, whom he was gently stroking. My parents instantly leapt into conversation with him. In order to avoid talking with Fred, I allowed my eyes to roam. I had been in this room before, but on this visit, I seemed to notice every detail.
Opposite the couch on which Fred sat was a khaki-colored love seat. I noticed a slight tear in the skirt of the small couch. Obviously, it had escaped Nancy's attention otherwise I'm sure it would have been mended. On the wall above the love seat were two wildlife prints. One was of a soaring eagle and the other a lone wolf. To my right stood a magnificent oak table with a vase of flowers placed in the center of the tabletop. Turning around quickly, as to escape Fred's eyes, I saw in the corner an antique grandfather clock. I watched the brass pendulum swing back and fourth to pass the time.
I was acting immaturely and I knew it. In an effort to correct my mistake, I turned and faced him. I barely recognized him. His full beard had been shaven away. The thick hair on his head appeared to have thinned. His eyes were sunken. However, the most shocking characteristic was his size. He once thick powerful body was reduced to skin and bones. I was now more scared than before. My head dropped as I reverted to looking at the floor.
"Steve," began Fred, "I'm glad you could come." I lifted my head slowly. The moment I had dreaded was upon me my eyes stared at his chin and moved up. Suddenly we were looking eye to eye. He flashed me a warm smile, which put me at immediate ease.
"I'm glad I could come too." I did not know it at the time, but this visit would be the last time I ever saw Fred.
Nothing in my past could have prepared me for what was to happen later that night. The event itself may not seem catastrophic, but the emotions it evoked were unlike any I had ever experienced. Not much was said on the ride home. Fred was dying and we were emotionally preparing ourselves for his departure. Things were slightly more animated at dinner, though no one was in high spirits. Following the meal and the subsequent clean up, my brother and father adjourned upstairs. I walked in to the family room and slumped onto the couch. Mom remained in the kitchen making coffee, and joined me shortly in the family room. I noticed the shudder in her voice, and a single tear running down her face. I could sense there was something she wanted to tell me.
"Steve," she began, "If I tell you something, will you promise to tell no one else?" I started to respond in the affirmative, but she interrupted me. "Think before you answer. What I have to tell you will be shocking. You'll probably want to tell someone." After thinking it over for a few seconds I still answered yes. She sat down next to me. "Fred isn't dying of cancer…" she paused and swallowed hard, "He's dying of AIDS."
AIDS-the words echoed through my head. I could not believe my ears. Wasn't AIDS a disease for prostitutes, homosexuals and drug users? How could it happen to Fred? Mom continued, but I barely listened. I was to shocked. "They don't want anyone to know. Nancy's afraid if the neighbors find out they'll burn the house down or something." Mom walked into the kitchen to tend to the coffee, leaving me utterly dumbfounded on the couch. I was living in the age of the AIDS scare, but I had never been frightened.
AIDS was the subject of magazine articles, statistics, charts, and television programs. Somehow, it had never been a real disease, until now. Suddenly, AIDS had a face, it had a voice, it possessed feelings. On December 28, 1992, AIDS thrust itself into my life and found me totally unprepared.
A lot happened in that fifteen minutes. I was transformed from someone who scorned AIDS deserving victims to one who sympathized with its innocent casualties. When my mother returned to the room with the coffee, she explained to me that Fred had most likely acquired the disease from a blood transfusion, in the dawn of the epidemic. A few days later, as we welcomed in the New Year, we said good-bye to an old friend.
I think one of death's greatest powers is the ability to produce massive change. Fred's death changed me, as death still does. It awakens in me a compassion for people. It reminds me that I'm not in control. Most importantly it makes me want to focus my life on the things that matter most.
11) My hands were slightly sweaty and I could feel my heart pound in my throat. The baseball cleats I still wore clicked softly on the linoleum floor. As I walked through the ICU at University Hospital, I was able to get a glance at other worried families and their critically ill loved ones. Some were laughing, smiling and engaging in light hearted conversation, whereas others had tears in their eyes and were very somber. Al of the patients were unconscious and connected to a plethora of wires and tubes. The nurse I was trailing pointed towards a curtain-drawn pod and left -- left me alone to face my fears.
I stood in front of the curtain for a few moments in a attempt to understand the reality that I was about to face. It was only this morning that I was playing baseball and had received word that my grand father was involved in an auto accident. He had been returning from a trip to North Carolina and had said he would be back in time to see the game. The accident occurred about a half hour form the ballpark, and he was airlifted to the hospital. He was taken directly to the ICU and was now behind the curtain into which I was blankly staring. I reached out and pulled the curtain back and stepped in to the pod.
My grandfather had a huge bandage wrapped around his head and, like the other patients in the ICU, was coupled to many machines. As one might expect, it was depressing to see a vibrant and independent individual rendered helpless. I stood by his side, but was afraid to touch him as it may have set off an alarm of some kind. I stood there for quite some time, thinking of the many experiences that I had shared with him. I stood there quietly, listening to his heartbeat.
After I had convinced myself that his life was in no immediate danger, I left the ICU to go home. I met back up with my dad in the waiting room, where he was engaged in conversation with the doctor. Upon leaving the hospital, I learned, from my dad, that my grandpa was in stable condition, and the injuries he received from the accident were not life threatening. Unfortunately, he had an inoperable tumor in his left lung, and only had a limited time left to live. This news devastated me. All I wanted to do was to just go home and shut everything out of my life and handle my grief alone. I expressed this to my dad, though not exactly in those words. This sparked a memorable conversation
Walked about many things in this car that day, but one simple quote has stuck with me through the years, "Honor your grandfather by living, because through your life your grandfather will continue to live." Those simple words impacted me greatly at the moment and still do today. My dad drove me straight back to the ballpark, where the second game of the doubleheader was just beginning. During my first at bat, I singled a curve ball up the middle and took second on an error. With tears in my eyes I said a prayer for my grandpa on second base. That day I learned a very important lesson of life.
Over the course of the next six months, as my grandfather's condition slowly deteriorated, I spent a lot of time with him. We talked mainly about baseball and how my life would change with my first year in college. We never talked about the sad event that was imminent. Of course, that was fine by me, as I had no idea how to talk about death. So as the summer slowly crept by, my grandpa and I became even closer. Despite his efforts to disregard his future, he became much more emotional as time went by. I distinctly remember him walking towards me with a newspaper in his hand. He was crying as he pointed to my picture. I had been voted onto the high school all-city baseball team, and he was choked up with emotion. I had never seen my grandfather cry before.
Despite his heightened emotions, I could read his thoughts through his eyes. It was very evident that his impending death was a shock to him. After all, he had so much more to accomplish and to experience in his life. How could he be dying, with so much left to do? I had heard all the "comfort" sayings such as "he led a good and complete life," and "it's just his time." What is a complete life? How does it make it right or fair when it is your time? My grandfather was a good man with a lot of life left in him, but he was dying just the same. Yes, I could see his thoughts, and they were asking these very questions.
Unfortunately, no one spoke with him about these thoughts or expressed their feelings about death with my grandpa. He died on November 7, 1993 in my grandmother's arms answering her question "do you know who I am?" My grandpa simply replied "of course I know who you are," and passed away. Sadly, he was still struggling with the concept that he was dying. I know this, for I could still see the question "why?" in his eyes during his final moments. He had not accepted death and, consequently, lived in fear of death those last six months. If only we had expressed our love for him through helping him to accept his death. If only we had shouldered part of his overwhelming burden. If only we had understood what he was truly going through. If only one of us would have been brave. If only…but we remained silent, and my grandfather's questions and fears remained his and his alone.
12) Six years ago this month, my father fell seriously ill with a cardiovascular emergency requiring immediate surgery. As a further complication, he suffered a stroke, along with severe kidney damage. Miraculously, he survived the ordeal but over the next several years, he suffered greatly with one complication after another in his recovery, until last June when his suffering ended, as he passed away. The early experience of his illness truly changed my life, because it convinced me of my calling. The mission to become a physician. However, the years after were just as pivotal, because with each new setback and experience that he went through, I learned a new lesson about patient care and what kind of physician I wanted to be. These lessons were continuously learned right up until his final passing when I learned the greatest lesson of all. When a patient is dying, you not only have one patient to look after, you also have a number of other patients whom you have taken on in the process. Those added patients include the family and loved ones of the dying. To explain clearly how this lesson was taught, I will share my experience during my father's last battle for life.
About two weeks prior to his death, my father was admitted to the hospital with an acute case of hyperkalemia and atrial arrhythmia. The hyperkalemia was treated and stabilized, and I.V. therapy was administered to re-establish normal atrial function. Over the next several days, the atrial arrhythmia was still persistent and further tests were run. Those tests indicated that he was reaching the final end stage of heart and kidney failure. The cardiologist and nephrologist (both of whom had handled my father's case since the initial illness six years ago) were very open with us and explained their plan. This plan included, electrically shocking the heart to reestablish normal rhythm, in the hopes of secondarily establishing normal renal function. However, it was made clear that even if the procedure was successful, his heart and kidney were too badly damaged to ever allow for normal life. We had little interest in the bad news, however we just wanted anything done that would help extend his life. As plans were made to set the heart back into normal sinus rhythm, a major setback occurred when he went into acute renal failure. With the fluid building up, the heart was rapidly getting worse. At this point dialysis was performed to remove the excess fluid. However, despite the great deal of excess fluid that was recovered, the physician decided that the heart and kidney were too badly damaged to support life for much longer.
The situation was explained to myself, my brothers, and my mother. As difficult as it was, we decided to let nature take its course and make my father a "no code." I will never forget how kind and caring the physician was in explaining the situation and the options.
While this was the hardest decision we have ever had to make, he was so instrumental in helping us to understand that the decision to not prolong the inevitable, was the right one for my father.
However, as much as I will never forget any of the physicians for their understanding during that experience, I will also never forget their actions following the decision, as we waited for "nature to take its course." Family and friends immediately begin arriving at the hospital in the hopes of seeing my father one last time before it was over, and as they arrived, they brought with them many questions and concerns. Unfortunately, those questions and concerns were unanswered, as the physicians were never seen again. Other than stopping in at the nurses station in the early morning hours on rounds, the physicians overseeing his care made virtually no effort to make contact with us. His cardiologist, who had been his physician for over five years and who we felt had developed a strong relationship with my father and mother, left town without even contacting us to see if we had any questions or concerns.
Three days after it was decided to let my father go, he died quietly in the early morning hours with all of the family beside him. None of the doctors were around, and we left with only condolences from the hospital-appointed chaplain. Two months later I started medical school holding onto a lesson that I will never forget. In the course of seeing one of my patients dying, I will fully recognize my responsibility to my new patients. Those patients are the family and loved ones of the dying. Those loved ones have questions and concerns that are causing them distress, and they will look to me to help to some extent to ease the distress. Therefore, I will make it my responsibility as a physician to see to it that these needs are meet, and I will make myself regularly available to the loved ones of the dying to address any concerns that they may have, because they are my patients too now.
Do I recognize that getting too involved may affect my objectivity as a physician? Yes, but I also understand that once a decision has been made to no longer perform drastic measures to keep a patient alive, the responsibility of the physician is not to objectivity, but to compassion. By compassion, I mean making sure that not only is the patient comfortable, but also that the loved ones are as comfortable as possible, as well.
In medical school orientation, it was instilled upon us that the job of the doctor is to aid those who have disease. Disease is a word meaning not at ease. The physician must help not only those who are not at ease physically, but also those who are not at ease emotionally and mentally. Therefore, when a patient is dying, he/she is diseased physically, but there may be a whole room of family and friends who are not at ease mentally and emotionally. Therefore, it is our job as future physicians to understand and recognize that our responsibility is also to give aid in recovery of their disease, as well. That aid can be in any number of ways. In the example of my life, aid would have simply been for the doctor to sit down for just a few minutes with the family, each day that my father held onto life, and explain what was going on and address any questions or concerns.
The doctors in this case did not do that, and while I didn't have ill feelings toward them, I do not have the same feelings of respect for their performance that I once felt. Those doctors needed to understand that despite the modern, fast-paced managed medical community that exists today, their responsibility still stretches well outside the boundaries of just the admitted patient.
13) This assignment seemed virtually impossible. The class was required to compose their own poetry based on the style and text of the student's favorite poet. The poem should reflect an incidence of meaning in the student's life, and elicit a sympathetic response from the reader. I remember the exact assignment to this very day, because on the day I received it, I panicked. English had never been one of my favorite subjects, and I had decided to take Advanced Placement English because the guidance counselor thought I was capable and my mother expected me to live up to my capabilities. I would have been just as happy taking a senior seminar course, as most of my focus was directed towards my calculus and physics classes. I especially hated poetry, with the strong emphasis on abstract images and feelings. Admittedly, I never tried exceptionally hard to understand the theme of the piece if it was not spelled out for me. However, I still felt as if interpreting subjective meaning was a waste of time, especially when I could hurt my ever-important GPA if I happened to misinterpret the elusive and mysterious text.
The teacher of Advanced Placement English, was feared throughout the entire school. Those who had her for other, more remedial classes, complained endlessly about the amount of work she required. More ominous were the warnings from graduates who had taken her class their senior year. One former student claimed, "You'll spend five days poring over a chapter of Crime and Punishment and when you receive her quiz on the chapter, you'll swear you read the wrong book." Others promised that it was impossible to get higher than a B in her class. The thought of a B horrified me. I was used to sliding through school with absolutely no worries, and my perfect GPA was now possibly in jeopardy. My goal was to go to the University of Notre Dame, and I certainly did not need to mar my chances with a class I had no real desire to take. The first poetry assignment (given to us on the first day of class, of course) was followed by a steady stream of papers, tests, in -class essays, presentations, speeches, and two full-page lists of reading materials. For the first time in my high school career, I was challenged. Though of course, at the time I did not see it as a challenge, but as a punishment. This rather cowardly perspective lasted for quite some time, and I continued to lose more and more motivation to actually think about my work. I convinced myself that my physics and calculus classes were more pertinent and respectable, and therefore deserved more (if not all) of my attention. The assignments that I turned in were normally started the night before, and completed while listening to music or during breaks at play rehearsals. I naturally assumed that she either would not notice, or would assume that I was not the most gifted of English students. Those assumptions would have suited me just fine. After all, did anyone really care about the use of color and its symbolism in The Great Gatsby?
Fortunately for me, she did notice the quality or lack thereof, of the work I produced. Furthermore, she was well aware that I could easily turn in more reflective and intelligent assignments. One afternoon in December of my senior year, she asked me to come see her at the end of that school day. I clearly remember feeling more than a little irritated, as I was involved in numerous activities that were meeting after school as well. I certainly did not have time to conference with my English teacher. I knew the last paper was the reason for the meeting, because most of the theme I had taken directly from a synopsis in Cliff's Notes. To my surprise, she sat me down and began discussing "life" with me. She asked me about my goals and how I hoped to accomplish them. She asked what I feared in life, and how I planned on avoiding failure. While the talk was interesting, I naturally could not quite understand the reason for the discussion. When we had finished discussing both of our hopes for our futures, she asked if I would be interested in keeping a journal as extra credit in the class. The thought was definitely appealing, as I was receiving the dreaded "B" in the class. She promised that if I kept it relatively consistently, and used some insight into my reactions to events, relationships, and situations, I could bring my grade up significantly. The lure of an A was very appealing, and I accepted.
Though slow at first, my attachment to the journal grew steadily throughout the next couple of weeks. The comments from my teacher were very encouraging. She praised my sense of humor regarding the world around me, and she suggested I read works from authors who had similar perspectives. I found myself reading more and more. Not only was I reading the literature for class, I also read contemporary classics, literary magazines, and the newspaper. I felt the need to expound on my insights from my reading and relate them to events in my life. My teacher's comments made it much more worthwhile, because she would suggest a point of view that I had never considered.
One journal entry in particular elicited the most poignant response. I chose that occasion to write about my fear of death. A young girl in the community had just succumbed to cancer, and the entire school was talking about it. Nobody close to me had ever died before, and I wrote how unfathomable it would be to lose someone about whom I cared deeply. I could not decide whether or not I was more afraid of my own death or the death of someone I loved. Finally, I wrote how strange it was to imagine someone my own age facing and accepting death. My teacher's response revealed to me in one paragraph that life was more important than getting an A in class, having high SAT scores, or going to prom. She stated that one can accept death when one is satisfied with their life. One can only be truly satisfied with their life when accomplishments are measured in terms of potential. If you live up to your potential, she claimed, you should never fear death. For by living up to that potential, you have given all of your greatest gifts, and your life had meaning. This is true no matter what age, what religion, or what background someone comes from.
One month after I had written that entry, my teacher had to take an extended leave from teaching. The reason for her departure was not immediately revealed to us, but the rumors circulated rapidly. Finally, it was confirmed that she was in treatment for advanced stages of ovarian cancer, and the prognosis was not very favorable. I was convinced that she would pull through. After all, it was only March, and she had at least thirty pages of writing that she wanted to get out of us. Deep down, I feared that she would not survive, but I never really believed it could happen. After all, no one I had ever really come to know had ever died. The substitute encouraged us to keep in contact with her, as she asked about our progress and our college admissions repeatedly. She was especially interested to see if I was going to be accepted into Notre Dame, since she had helped me compose the essay for the application. I sincerely wanted to keep in contact with her, but I was afraid. My excuses were priceless. Such as, I did not want to intrude on her family, she might not be up to visitors right now, I have too much work right now, it can wait, and so on. I never did get in to see her, to thank her for opening my world to me, and to tell her that I was trying every day to live up to my potential.
I found out in April that I was accepted into Notre Dame. My excitement was endless, and I told everyone I saw. Apparently, word got back to my teacher, and three days after I got my acceptance letter, I got a small card in the mail. She wrote, in noticeably forced handwriting, how proud she was and how deserving I was. She claimed that my future was endless, and any obstacle I encountered could not win over my ability and my drive. She wished me her best, and promised to root for the Irish next season. After receiving the note, I told myself to go and see her, but I still could not convince myself. About five days after I heard from her, she died.
When I heard the news, the strangest emotions competed for supremacy in my body. Guilt overcame all of them for a long time. I was so disappointed in my cowardice, and my inability to face the death of someone I knew. Sadness and anger were both present as well, but still the guilt remained. Compassion for the members of her family and pride that she had thought so highly of me slowly tried to displace the remorse. It took many months before I could even open the journal again. I threw away every poor paper that I had turned in, and tried to erase from my memory how angry I used to get at the assignments. I attempted to ignore the event itself, and remove myself from the situation. I convinced myself that I was never that close to her, therefore I should not feel obligated to mourn her loss. Finally, however, I accepted that I did miss her. She not only taught me about Death of a Salesman and Hamlet, but also about how one can make the most out of what they are given. When I concentrated on what she had given to me, I realized that I may have given her some small satisfaction as well. She knew because she read the journal that my appreciation for truly important knowledge was increasing. She knew that she had made a direct impact on my ability to think and reason. Though I still feel guilty for being too afraid to see her in those last weeks, I came to accept that she could not have been too disappointed in me.
This realization helped me to deal with the "why" of her death, and taught me to make the time that I have now with the people I love that much more valuable. Her presence in my life was so very valuable, and when I concentrate on how thankful I am to have known her, I can appreciate how painful it was to have lost her.
14) I wanted to thank you for the opportunity that I had of visiting with Anna prior to her passing away, I truly learned a lot from our weekly chats. In fact, I hope you don't mind that I am submitting a copy of this letter, with names changed, in fulfillment of an assignment for a medical school class - certain requirements of which would be approved by Anna, I think. Most importantly, this letter is to show my appreciation for this fine woman and to put it in writing the things that I learned from her.
The hospice volunteering program provided me with a meaningful experience by taking a few hours out of my schedule each week to walk Anna in her wheelchair around your neighborhood at the base of the 13,000-foot-high Mount Nebo during the green, almost England-misty spring afternoons. I tend to remember feelings - impressions - more than the fading memory of sights and sounds, but I will attempt to recapture the conversations that I had with Anna that have left me with permanent indelible perceptions. She was a mountain of strength that invigorated my spirit.
Pre-judging her by her small frame and limp walk, at my first visit I was surprised by her energy, her unspoken command for respect, her self-assurance. Anna always greeted me with an emphatic, "Hello, love!" in her unique English accent. Her flowing white hair, goddess-like, accentuated her dignified countenance. Yet she was one of the most personable people I've ever met. One message, only subtly implicated in everything that we talked about, is this; "Live so that when you're in my situation, you will be at peace - like I am." She asked me questions about my family, friends, and aspirations each time I visited her, which helped me in maintaining my priorities and in seeing the big picture in life.
If the characteristic of resiliency had a Leadership Corps, Anna would be a Major General. She openly confided in me regarding things that were closest to her heart: how her beliefs had merged with her daily action; how she endured a divorce with her first husband; how she adapted to a move to the United States soon before her second husband passed away; how she served faithfully on two extended church missions. Her life was a finely woven fabric of enjoyment in the face of difficulty…even when life's game of chance threw a six-month delayed cancer bomb into her physiology. "I'm feeling worse this week. But I'm going to be fine - you've got to stay upbeat, right?" And she did.
Her sense of humor was contagious. I really wish that I had tape-recorded some of our conversations so that I could hear her voice:
"I used to be in great shape. People don't believe me but I was." A quiet laugh was followed by a light sigh. "Now my belly is full of cancer."
Referring to her drug regimen: "I'm a druggie, a stoner.. Isn't that what the kids call them?…that's what I tell my doctor. He's turned me into a drug-user."
Referring to her experience of being widowed: "He left me. I still haven't forgiven him for that. That's right - I haven't. I distinctly told him, 'You can't leave me!' But he did and I'm still upset. We're going to have a serious talk about that soon."
She realized that her attitude could sweeten the bitter fact that what is expected is not always what would happen. I personally can't think of a more ironic situation than facing any kind of death.
In our conversations, Anna emphasized the importance of my becoming a good oncologist. "always spend a little extra amount of brainpower to make each patient feel comfortable," she would tell me. Anna loved her last oncologist because he did just that. I wasn't surprised when a statistic was recently shown in one of my classes that indicated that the average time necessary to greatly increase a patient's feeling of peace was three minutes. "It's not that hard. It doesn't take that much extra effort."
Finally, I learned that as an oncologist, I won't be expected to have all the answers, but that if I try to understand people and empathize with them, the burden of death will be lightened. It was so easy with Anna, and now I feel less reluctant to interact with people facing similar situations.
15) I'm paging through headlines in the newspapers. Headlines you see everyday. Headlines such as : "Student at Capital slain in car-jacking," "Student from Mentor Killed," "Mentor Graduate found slain," "Mentor teen shot, killed," and some twenty others. Everyday you see the headlines like these; everyday you page through them to get to the sports page, the comics, or the horoscope. Everyday, except September 20, 1996.
Barely a year has transpired since I started clipping articles that depicted this random act of violence. This is a day burnt into my memory. The day a life stopped short. The day a dream ended. The day tears would flood for my little brother, Tony.
I can't tell you why I saved every article that was written about my brother's death. I put them all in a photo album filled with pictures of the nineteen years that my brother was able to see. Each article tells a little bit of the story, some about his college years, some about his high school days, others about the three teenagers who took Tony's life, and still others about the trial.
In addition, each article tried to capture something about Tony to which strangers could relate. His art was chief among these. Other journalist centered on their arguments about Tony's would-be career in art therapy, his devotion to helping others, his service to the community. My favorite was exemplified in an article by the Plain Dealer about the only tangible with which our family was permitted to leave. A ring that will remain on my finger, as it did on his.
The article read"
"All the hospital could give them was the ring. The police had taken the clothes Anthony died in as evidence. His car was missing. The same predator had snatched both it and his life early Friday in Columbus.
So all the Ohio State University Hospital could offer his parents the day after their 19-year old son was killed in an apparent carjacking was Tony's silver ring with the Chinese symbols for yin and yang on it.
'He wore it all the time,' his mother said yesterday in her living room. Her fingers were intertwined with those of one of her surviving sons, Mathew, sitting at her side, now wearing the ring. 'He never took it off.'"
This death and dying without a moment to prepare. There is no structure. People try to grab onto anything that they can. They will take pictures, paintings, videos, or a ring. We're not read to deal with what is right in front of us, and we cling to the tangible.
THINGS HAVE STILL GOT TO BE DONE
My parents burst into the room that Friday morning, around 4 a.m. My mother was already in tears screaming, "they shot my baby!" It didn't take me long to figure it out when my father told me the news. So you're expecting me to say that I was in shock? In denial? I can't call it either.
I don't know what to call it. I understood what happened, and I accepted it. I wouldn't say that it was a jump to peaceful acceptance, but for the next couple of hours it was as if I had acknowledged it and moved on. I sat there, calm, collective; I made the calls to my two other brothers, my girlfriend, friends and family. I seemed to be the only one who could keep his head in it. Things needed to be done, it seemed like I was the only one that could do them.
I was feeling so calm and accepting of the situation that I even decided to go to school that day. I went to class like nothing had happened. I put up my normal jovial front and went right on living. All I wanted to do was to deal with Tony's death on my own time. I had no clue what to tell my friends, teachers, or coworkers. So I didn't say anything. I knew I didn't want anyone's sympathy, and I knew I didn't know what to say when people would say, "I don't know what to say."
I was handling things at school, and I was handling this at home. My parents were devastated, exhausted, and couldn't deal with anything else. Luckily, some friends of the family drove them down to Columbus to be with my brother for the last few moments of his life. I stayed behind to make sure that the rest of the family knew where to go, what had happened, and where the family stood. Basically, I was a relay station. I was also handling all the newspaper and television news calls. I spent more time on the phone that day than a kid in junior high school.
Finally, I was able to get down to Columbus. Everyone was there waiting for me; which, of course, made me feel guilty for not being able to get there sooner. It was explained to me that he had been killed "execution style," which is to say that the murders had him lie on his stomach and shot in the back of the neck. the bullet, therefore, entered at the base of his neck severing the brain stem, as it ascended into his skull. He was brain dead. I saw him, and he just looked asleep. Besides his eyes being blackened from the broke blood vessels, he looked perfect. I knew he was gone, but he just looked he just looked so real. I held his hand and it felt so warm, so soft, so real. Occasionally there would be an involuntary twitch, everyone would point it out, and the doctors would inform us of the anatomical reason behind our anticipation and excitement. So real, so alive, and yet so empty. His body radiated. I was expecting a cold hard shell, but this body that once held the soul of my brother seemed so alive. It's no wonder that I stood over his rising and falling chest, speaking my last words to my baby brother.
Near midnight on that Friday, we were escorted out of the ICU as the physicians prepared to take Tony's organs. We spent the night in the city that claimed the life of the little brother that had always followed me around. There would be no footsteps behind me.
Back in Cleveland, we found that things were going from hectic to hellish. A funeral still had to be planned, interviews with the media still had to be conducted, appointments with the authorities had to be kept, details with the organ donations had to be completed, not to mention every neighbor, friend and acquaintance had heard what had happened and were paying their respects. Things had to be done, and once again I took over.
I can't tell you where this would fit on the states of grieving, but it fit right in me. The adrenaline was pumping, and I didn't sleep a wink up through the wake. I handled late night visitations, financial concerns, travel for relatives. If there was something to be done, I made sure that I was doing it. The wake was no exception. I spent every moment at the wake taking care of my parents, making sure people were "holding up," handling introductions, and comforting anyone with tears in their eyes.
WHEN IT HITS YOU, IT HITS YOU LIKE A TRAIN
After everyone left, I sat down in a chair (perhaps for the first time), and my body crashed. With it, came emotions I wasn't expecting. I know the stages of grief, so I was expecting something like anger, bargaining, anything, but the only thing I felt was guilt. Guilt that I wasn't mourning half as much as people who didn't know him. He and I shared a bedroom for sixteen years, and I couldn't even break down and sob as well as his coworkers who knew him for six months. Guilt and I went hand in hand up until the day of the funeral.
At the funeral, all I felt was loss. Standing in the pew of the immediate family, I slowly began to tear. I wasn't thinking about my loss, however, what made me cry was thinking about Tony's loss. I had been asked in the waiting room of the ICU to be my brother Chris's best man, and all I could think about was that Tony would miss the wedding. I thought about him missing all sorts of things, from my graduation to my engagement, from his twenty-first birthday to his commencement, and I cried.
There is so much I wanted him to see. As a Catholic, I believe he is with us always, and that he has seen all that I wished he would.. I believe that, but it just doesn't help that there is an empty space at the dining room table, an empty bed in my old room, and an empty space where he was in my heart. I wish he could be here today.
IF THERE 'S ANYTHING THAT I KNOW, IT'S THAT I KNOW NOTHING
The stages of death are so simple, so linear and so difficult to apply to a real person. My mother and father lived in denial even after Tony's body was placed in the Earth. They both are fuming with anger to this day; they follow the trials to the letter, and they feel defeated when the absolute limits are not imposed. They bargained in the ICU offering their lives, offering to change their roles as parents, offering anything. I don't have to tell you about depression, and I can't tell you about acceptance-it's too early, and it may not come at all. They both see a grief counselor, and their faith keeps them going. They might be prime example of the stages depicted by Elisabeth Kubler-Ross, but I can't say.
As for me, I just don't know. I think that doing everything for everyone really got me through most of the ordeal. I just have to be keeping myself busy. I still feed
