by Studs Terkel
When it came to Ida, I had about ten different feelings.* One was tremendous grief about her death, because I had enormous respect and affection for her. One was a sense of remorse: Had we made the wrong decisions in terms of recommending this particular course of therapy? Going back and doing a retrospect analysis. Did we overlook anything? What had gone wrong? One was: How am I going to confront you? I had learned that I was the one who was going to be telling you she had passed away. How am I going to break the news to you and your son? What words am I going to use? What’s going to be your reaction? How are we going to interact in that terribly difficult period in your life and in my life? How can I help you after I’ve done that? What are the next steps? That’s why I was so grateful to see that your son was there, that you had people with you.
A physician must be honest in dealing with a patient. If the patient senses a lack of integrity, it’ll undermine the whole process. At times being honest means bringing bad news. What I try to do—I’m sure I could do it better—is to tell the patient what the facts are. Then to do my very best to point out that there are ways of dealing with this problem. It may be a palliative type of thing: we’re not going to cure it, but we’re going to lessen the impact. I truly believe that virtually every diagnosis we deal with today holds the hope of some breakthrough in the foreseeable future. I like to bring that to my patients’ attention. Right now we may not have a treatment or a cure for disease X, but so much is happening in the field . . .
My son had Hodgkin’s disease—it’s a cancer of the lymph nodes. When we learned that, I was devastated. The wonderful physician who took care of him pointed out to me that things are changing so quickly in this field that you should have hope—and she was right! He’s now seven or eight years after being treated and no evidence of recurrence. The number-one thing when you’re dealing with an incurable disease is to give the patient a sense of hope without being dishonest.
Grief and guilt are threatening subjects, more so as we get older . . . Because we’re getting nearer and nearer to our own mortality.
I think it’s become more of a problem as our nation has become more secular. I noticed as a child, from experiences with my dad, how much of a role religion plays in dealing with this issue—the belief in the life hereafter, salvation and redemption, that sort of thing . . . The sermons given at funerals, the masses, the expectation of something beyond—these things sustained the grieving family through this terrible period.
My father was very religious, Methodist. He was a regular churchgoer and did all the things that religious people in small communities do in terms of contributions and the like. But his real religious expression was in the way he lived his life.
I raised my children in a religious environment because I’m convinced unless you have experienced this as a child, you cannot recapture a religious belief as an adult. But my science background makes it difficult for me to accept some of the assumptions of organized religion. My experience with some organized religions makes me doubt that they are truly religious in terms of their compassion and their concern for human beings and the needs of human beings. I doubt that there’s a hereafter—and that’s probably the first time I’ve ever said that. [Laughs] But it would be nice if there were. Though I can imagine the enormous complexities if there is a hereafter and all my ancestors are up there!
I think of people who have lost a loved one, as I have—my first wife died ten years ago—and then later remarry. How is that going to work out if we’re all up there together with two wives? Maybe the Mormons were right. [Laughs] I don’t mean to be disrespectful . . . But it does seem a little difficult to put together from a scientific, rational basis that there is a hereafter. I guess I don’t really care. I think the important issue is the way we conduct our lives while we’re here, and the impact we have on other people while we’re here. And if it helps some people to think there’s a reward in the hereafter for being good, Calvinism or the Judeo-Christian ethic, so be it. The motivation isn’t as important to me as the solace it gives survivors.
I’ve always had an internal gut reaction against cremation. My initial experiences with it as the undertaker’s son were emotionally repulsive. I don’t know if I’ve ever gotten over that. When my wife passed away, my children felt very strongly cremation was the appropriate thing, and that my wife had actually told them that’s what she wanted. She and I never discussed it . . . I don’t know that I’ve really decided what I would want. I’ll leave that to my survivors.
I think that we need to take a more active role in deciding about our own terminal care. If you haven’t been able to talk about death and dying with your children, you’ve left them completely in the dark as to what you would like to have done. Most of us aren’t able to do that in the last few months of our lives. Everyone has the right to a graceful death. Unfortunately, we don’t have people die at home anymore, partly because there is this reluctance to engage in the process of dying. Many families don’t want a sick person in the bedroom, dying.
Last week, I attended a play, O’Neill’s Desire Under the Elms. There was talk in that play of the parlor, which no one had entered since the wife’s body was laid out there. From that point on, the parlor was never used by the family. That’s why often it’s called a funeral parlor, as it was in the old days. The service would be in the church, but the remains would be taken back to the home, and the viewing, the wake would be there.
The issue of dying is a very sensitive one in our country. I think it’s caused a lot of emotional stress, a lot of financial problems for people who haven’t planned in advance. It’s placed a lot of unnecessary burden on families because they don’t know what the wishes of the parent might have been.
When I was a kid my mother said, “There’s certain things, Joseph, you don’t talk about in polite company. You don’t talk about politics, you don’t talk about religion, you don’t talk about sex.” She never said death, but I would add that—because there’s a fear that you’re going to touch a sensitive raw surface on the other person, that you’re going to remind them of a recent death or stimulate their anxiety and fear about their own illness. I don’t mean that’s the next thing, but I think it is a topic that needs to be discussed so that we can get our fears and our anxieties out in front of us, take a look at them, and then begin to deal with them.
*Rush–St. Luke’s–Presbyterian Hospital.
*Ida was my wife. She died after undergoing heart surgery.—S.T.
Dr. Sharon Sandell
We’re in a high-rise on Chicago’s near North Side. Her one companion is Juliet, a little Pomeranian. She’s seen both sides of doctoring. “I seldom go outside now. I have spinal problems, both neck and the low back. I’ve had repetitive spinal cord compression for three years. I’ve moved here because it’s not safe for me to drive anymore. I don’t have enough neck movement. Ten pounds is as much as I can lift, even and that’s pushing it . . .” She moves about as carefully and gracefully as she can, but with obvious difficulty and discomfort.
I GREW UP in a part of Phoenix that was surrounded by wealthy people, but we were very poor, blue-collar poor. My parents were against education: they thought it was a waste of time for a female especially, and of course they didn’t want to pay for it. My father actually set up my getting married when I was very young. He picked out a guy and arranged the first date. If I dated anyone else I had a curfew, and then there were a million questions—it was difficult. With this guy, I could stay out all hours, no questions asked. I married right out of high school, I was seventeen. It didn’t last very long.
My goal was to get a college education. I just knew that there was more to life than being married. I wanted to know all I could know. I was very good in school. I excelled at everything. I didn’t find out until I was in my thirties that I had been tested in kindergarten and my parents were told I should have been put in classes for very bright children. But that was kept from me—they didn’t want me to excel in any way. I real
ly do believe that they didn’t want to have a child that didn’t know her place. They knew their place . . .
When I started college, gee, it was one surprise after another for me. I was majoring in engineering after I found out how good I was at math. I was the only female in any of my engineering classes. I got national recognition for our project in engineering design. But I couldn’t find work that I could do around the scheduled classes. That’s when I started working through one of the nursing registries as a sitter, a baby-sitter for sick adults. That was good, ’cause I could stay up all night and study.
Then I found out I could make more money if I got six months of training as a nurse’s aide—changing bedpans, getting vital signs, giving people bed baths. I had to decide whether I was going to finish engineering. I decided to stick with nursing because I was enjoying working with people more than with things and because there was still an incredible amount of prejudice against women in engineering back in the early seventies. I got a Bachelor of Science in nursing—that was in December of ’78.
As soon as I graduated, I went to work for Maricopa County Hospital in the neonatal intensive care in Phoenix. I wanted to continue on to become a neonatal nurse practitioner—but, in order to do that, I needed a master’s degree in nursing. I had to go down to Tucson to the University of Arizona. When I interviewed for the position in the master’s program, they told me I had to have two years of medical-surgical floor nursing before they would let me in. Which meant I would have had to quit working in the nursery, which I loved doing, work with adults, and then apply to the master’s program. I got angry.
The college of nursing was sitting right perpendicular to the college of medicine. After all I had been through I was so angry that a straight-A student wouldn’t be accepted in their master’s program without two years of nursing, that I marched over to the College of Medicine. I found the dean of students and knocked on his door—I said, “What do I have to do to get in here?” I was thirty years old at the time. When I was twenty-three, I had been told I was too old to apply to medical school . . .
In eighth grade we had to do a paper on what we wanted to be when we grew up. I wanted to be a doctor. So here I was, turning down a good-paying job in nursing and struggling with putting myself through medical school? I worked as a nurse for the first two years of medical school, at night. Medical school was much easier than nursing school. I loved emergency medicine. Northwestern had the only residency program at the time where you could get board-certified in both internal medicine and emergency medicine. Now I’m ten years older or more than most of the students. At Northwestern there were eight hundred applicants for eight positions. I have no idea how I made it, but I was one of the eight. I’m really bright. I know that now, but I didn’t know it for a long time.
I herniated the disk above one that had already been operated on in my senior year in medical school, in ’83. I was working as the admitting resident at Columbus Hospital in the intensive care unit. And I got called down for a woman who was having massive rectal bleeding. They had put MAST* trousers on her. It was a procedure that called for all kinds of pressure on the abdomen, on the theory that it would save that blood for the brain and the heart. They don’t use it anymore because it didn’t work, but one of the cardinal rules was that once you pumped it up, you couldn’t just let it down—it had to be let down very gradually or you’d kill the person.
I pulled the curtain back and I could see these MAST trousers on her, and she was just as blue as the sky. What I discovered was that while they pumped up the trousers, they were getting people in from another accident, so they were doing everything very quickly. They had caught the patient’s gown in the trousers, so that when the nurse pumped up fast, it was strangling her. I tried to get the neckline free, and I was calling out for someone with scissors—I couldn’t find anything. The only way I could make sure this woman didn’t strangle was to actually tear that neckline, and that’s how I herniated the disk. I worked my fingers under there and ripped as hard as I could. I knew something was wrong within minutes of having done that. I just about passed out from the pain.
It turned out that she should have never even been brought into the hospital. She came in from a nursing home with “no code” written all over her chart. So they never should have brought her to the emergency room in the first place. I saved her life for no good reason. She probably died within a week or two.
What really did me in, though, happened in 1993 in Mesa, Arizona. I’m working in the ER, all these years later. A man had had a very severe heart attack and had been given thrombolitic therapy to thin the blood. Something that he was on caused his tongue to swell massively. The ER doc there for the night shift, who was trying to resuscitate him, couldn’t get an airway in. She couldn’t do a tracheotomy because of the thrombolitic. He would have bled to death. So I offered to help, to try to get a tube through this massively swollen tongue. I was pulling on that instrument; it’s called a ringoscope. You get the tongue out of the way so you can see the vocal cords and put the tube through. I was pulling on it for all I was worth and my neck blew apart. I didn’t know that the surgeon in ’87 took out most of the joint at five–six to get rid of the disk material. So I had one joint holding it together. That blew apart. It was misdiagnosed for fifteen months. If I’d not been a physician, this would have killed me. I diagnosed myself. Finally, at Scripps Clinic I got referred to a surgeon who could fix it.
My biggest grief is the loss of a profession that I spent my whole life working for. It’s years of my life down the tubes. Now it’s a love–hate relationship. I’m not so sure I love medicine so much anymore. Maybe two months ago, when I went to see my doctor who’s treating me now, I looked at the X-ray view box and I realized, “I’m not a doctor anymore,” and I just broke into tears. The loss of my true love. It surprised me. I’ve had some people say things like, “Oh, what a waste, all those years and you’re wasting all that knowledge.” But if I hadn’t been a doctor, I wouldn’t be alive today—I’m the one who finally figured out what was going on with my neck.
Medicine is a big business now. It’s not Marcus Welby, MD, anymore. HMOs and managed care don’t let physicians work from their heart. I hate to see what’s happening to it. There are a thousand things wrong, a million things wrong. Our priorities are so messed up. When you look at us spending thousands, millions of dollars on trying to save infants that are born way too premature and we torture these little beings for several months, and then they’re either brain-damaged and have horrible, institutionalized lives or they die, and you look at hungry children out on the street who could have half a chance with the money that we’re throwing away. When I was in residency, a lot of times we would see people we knew were going to die. I remember in particular one woman with terminal breast cancer who required almost daily blood transfusions. If she did not have insurance, she would not have gotten the transfusions. And what did we do for her, other than padding the pockets of the hospital? We kept her going for as long as the insurance kept paying.
There’s a condition called a dissecting aortic aneurysm. The aorta is the first big, heavy vessel off your heart. An aneurysm is a ballooning out, a weak spot. If it ruptures it doesn’t take too many heartbeats before you pump out all your blood and you’re dead. Saving someone in the emergency room with a dissecting aortic aneurysm is a real coup. It’s a very difficult thing to do. You’re so proud of yourself as the physician who can make the diagnosis fast enough and get everybody doing the right thing at the right time. I did that.
When I was working in Mesa, I had a gentleman come in. I diagnosed him right away. Everything just clicked fine and I knew he’d made it, we’d saved him, and I was so proud of myself. About three weeks later, I was the ER doctor and suddenly got called up to reinsert the nasal-gastric tube in someone. It turned out to be this guy I’d saved. The minute he saw me he goes, “You’re the bitch that did this to me.” He was furious that I had saved his life, absolutely fur
ious. He just didn’t want to be alive, and he was mad I’d saved his life—he’d been robbed of dying a nice, fast, natural death. [Laughs]
Ultimately the patient, not the doctor, may decide life or death. Ultimately, who decides when you die is you. A colleague of mine had a patient in the emergency room on Christmas day saying she was sure she was going to die. The ER doctor did a complete workup on her and couldn’t find anything wrong in the chemistries, blood gases, X rays, you name it . . . She still insisted she was going to die, but she really had no medical problems. The doctor called her attending physician who said this woman was not a hypochondriac. He knew her very well, had taken care of her for years. Even though it was Christmas, he was going to go in and see her. He looked at all of the workup that had been done, examined her, and there was nothing wrong with her. As he was in his car, starting to drive out, he got the page to come back. She was getting dressed to leave, had been discharged, and she died. Nobody ever knew why. She knew she was going to die. We don’t know what she died of, but she died.
*Manually Adjustable Sphygmomanometric Trousers—a medical article long out of use.
