Both patients and doctors have expressed dismay at the way health care currently is delivered in this country, driven by market forces. The essence of healthcare has traditionally hinged on the personal relationship between a patient and a doctor, freely chosen by the patient to provide needed medical services. It's easy to sit and lament that the days of the home-visiting, hand-holding, kindly doctor carrying his black bag are gone.
There was something comforting about seeing the physician arrive; he (it usually was a man) seemed like a living antidote against the fears of illness. Kindness, concern, and handholding were some of his most powerful tools. The black bag hardly carried any drugs that could cure illness. Early in the twentieth century, Supreme Court Justice Oliver Wendell Holmes is said to have remarked that "if the whole of the material medica, as used now, could be sunk to the bottom of the seas, it would be the better for mankind-and all the worse for the fishes."
So be careful in wishing for the "good old days" of health care. The care might have been kinder and gentler, but the ability to diagnose and treat was primitive compared with today's remarkably sophisticated methods. The striking extension of the average length of life for both men and women is evidence of the success. Medicine has become increasingly "high tech" in terms of the tests to find out what is wrong. Hearing the patient's main complaint, the story of the illness, and doing a physical examination form the cornerstone of making a diagnosis, but they are far from sufficient today. Blood tests, scans, and X rays all sharpen the accuracy of the diagnosis. But all these "smart tools" have had the effect of distancing the doctor from the patient, and placing less importance on their interacting with each other. Increasing evidence suggests, surprisingly, that computers may be able to take diverse clinical information, process it, and come up with a more reliable diagnosis than the physician who is relying on clinical judgment alone.
In a medical equivalent of the Deep Blue versus Gary Kasparov chess contest, Lars Edenbrandt, an artificial intelligence expert at the University of Lund in Sweden, pitted a computer against a physician. Edenbrandt, programmed the computer to "read" electrocardiograms (EKGs). He trained the computer by feeding it more than ten thousand EKGs, telling it which were from patients who had heart attacks. He then asked Dr. Hans Ohlen, an expert, to read several thousand EKGs and indicate which ones represented heart attacks. The computer rated the same EKGs-and won, with 20 percent greater accuracy.
What seems like a "bad news" story for the doctor-patient relationship may in fact have a silver lining. We can get greater accuracy and fewer errors in diagnosing diseases using technology, but there may be additional benefits. In a recent NEW YORKER article, describing this new computer capability with the potential to replace the fallible human being, Atul Gawande pointed out that in a new era "[physicians] will be freed to do what only they can do…talk to their patients. It's because medical care is about our life and death that we need doctors who can address our fears, hopes, and ignorance. Doctors who can help give meaning to what we're going through."
It's not only high-tech diagnosis but also high-tech treatment that is changing medicine. The more high-tech the treatment a patient must go through, such as bone marrow transplantation or repeated cycles of high-dose chemotherapy, the greater the need for the "human touch," since the emotional and human needs are greater. Fortunately, we have many ways to help patients cope with treatment today, including many things that might be called "high touch". In addition to the technological changes in medicine, health care in the United States has been turned on its ear in the past decade by managed care. The effect has been to batter the old-fashioned doctor-patient relationship. Health maintenance organizations (HMOs) and other managed-care plans, reimburse physicians at such low rates per visit that doctors schedule shorter and shorter office visits in order to see more patients. Both patients and doctors decry the new order that speaks of vendors, customers, and products. Health care is something that was valued as somehow set apart from, (and above) the world of business and the marketplace. Clearly, if patients and physicians banded together to protest, they could be more effective than either group could be alone. There is a need for new partnerships, between patients and physicians at a societal level.
These current problems point out even more emphatically how important the bond is between a doctor and a patient with cancer. The mind is the only organ that is involved in every patient with cancer. Meaning the human dimension is the only aspect of cancer care that is involved in every encounter, with every patient, at every visit, no matter what the cancer diagnosis is or whether the treatment is surgery, radiation, or chemotherapy. You would think this fact would have gotten more attention in medical schools, especially regarding cancer, but it has been slow to be recognized. Medical schools are now beginning to provide doctors with training in how to give bad news. More effort is being made to teach the importance of communication and how to do it better. Patients and their families repeatedly stress the importance of the way the diagnosis is presented and how helpful it can be when it is told in a sensitive and kind manner.
Joan a thirty-nine-year-old journalist, had her annual mammogram. The results were sent to her gynecologist, who called her and said, "I have the results of your mammogram, and I need to see you. We'll likely need to get a biopsy." Following the biopsy, she went back to her doctor, but this time Joan asked her husband to go with her because she had become increasingly anxious and worried, and she was not thinking as clearly as she usually did. The doctor sitting with them said, "The biopsy confirms what I thought it might be. The spot on your mammogram (remember you saw it, too?) is an early form of breast cancer. I know you must feel shaken, but we caught it early, and actually this type of cancer is highly curable. What we have to do is remove the lump first. Then we'll give some radiation to the breast, and after that, we may want to add chemotherapy." Joan began to cry. "How can I deal with this now? I have my mother's illness and the children need me. Are you sure?" Her doctor told her he was certain of the diagnosis and that her distress was understandable. "Right now, the best thing for both of you is to go home," he suggested, "and take time to think this through. We can meet again in about a week and discuss a treatment plan." After a few days of worrying and sleeplessness, Joan called her doctor for an appointment to get more information and a clearer perspective: "How will you know if you've removed all the cancer? What will be the side effects of the radiation and chemotherapy?" Joan said her doctor answered her questions thoroughly, and she felt reassured enough to go ahead with her treatments.
A poignant story illustrates how important it is to give particularly bad news in the kindest way, told by a patient who experienced it both ways:
Warren, a thirty-eight-year-old lawyer, asked advice about how to tell his family about his diagnosis of colon cancer. He had felt healthy and had no symptoms except for some rectal bleeding, which he initially had ignored after a physician had erroneously told him that he had hemorrhoids without pursuing a proper diagnostic workup. Several months later, he found, to his astonishment, that he had colon cancer that has spread to his liver. He had small children, a young wife, an elderly father, and brothers. He had lost his mother to colon cancer several years earlier. After being stunned at the news that he had inoperable cancer, this young man asked the first doctor, who had made the diagnosis: "Tell me, man to man, how long do I have?" Without any discussion, the doctor replied coldly, "Three to six months," and walked out of the consultation room, leaving Warren alone to absorb the horror of what he had just heard. He felt like giving up there and then.
He consulted a liver surgeon. This doctor, a man in his sixties, talked with him and reviewed all the information. Afterward, this surgeon sat down, reached out to hold Warren's hand, and said, "Son, do you know how bad this is?" While the news had been no better than it had been before, it was given in a compassionate and caring way, which Warren recalled with tears. The surgeon spoke with respect for his intelligence and feelings and made no guesses about time left, which are always unsure predictions. Warren continued to see the surgeon and decided to pursue aggressive treatment with chemotherapy and radiation, rather than just to give up hope. He continued to feel well and was able to enjoy his time with his wife and children. He has survived for two years, already outliving the dire prediction given him so coldly.
You have a right as a patient to expect your doctor to be assured that he or she is knowledgeable and technically skilled. However, you also have a right to expect caring and compassion from your doctor. Physicians who have these traits are able to think, "How would I want my doctor to treat me right now if I had received the same news?" Three C's form the cornerstone of good doctoring: competence, compassion, and caring.
A competent doctor without compassion or caring is daunting to the patient feeling uncertain and vulnerable. In diagnosing your cancer, your personal physician or general oncologist may say, in referring you to a specialist, "If I had this type of cancer, I would go with Dr. X." So you go to see Dr. X, reputed to be the expert or, if he or she is a surgeon, to have "good hands." And you may find that Dr. X is very busy and keeps you waiting for quite some time, signs that this doctor is in great demand and, therefore, probably quite competent. But when you finally get to see Dr. X, he or she is short with you, explaining matters in little detail and spending hardly any time with you. You may find yourself feeling ill informed, and ill at ease, at a time when you expect reassurance and hope to come away with confidence in the doctor. Clearly, you face a choice: You can say, "Competence comes first. I'll put up with the lack of emotional support." Or you can decide to seek another physician who is equally competent by reputation, but who puts caring into the paradigm by taking time to sensitively explain the treatment to your satisfaction.
Most young people go into medicine with a strong sense of humanity and humility, with the three C's strongly in place. But something happens to many in medical schools as they cram in more and more facts: They become fatigued and think they lack time for considering the human side of illness. We speak of the first two years of medical school as "preclinical," when the basic sciences are studied, and the last two years as "clinical," when experiences with patients are the primary activity. Dr. Balfour Mount, physician and director of palliative care at McGill University, jokingly describes the two periods as the "precynical" and then the "cynical" years, reflecting this change in attitude. Fortunately, as clinical training advances, most doctors return to their humanism. Taking full responsibility for their patients leads them to a healthy recognition of how important compassion and caring are.
Lewis Thomas, physician-philosopher, suggested that every physician should have a serious bout of illness to see what it feels like to be placed in the care of strangers in a strange place, without your own clothes or belongings, and with only a wristband to identify who you are. Most physicians who go through such an illness emerge with a new level of respect for their patients' point of view and for the importance of compassion and caring. Some medical schools have even had students become patients for a few days as part of their training, to allow them to get a feel of the vulnerability.
This concern for the human side of patient care is not new. In November 1926, Dr. Francis W. Peabody, Professor of Medicine at Harvard, and Director of the Thorndike Memorial Laboratory at the Boston City Hospital, gave a lecture entitled "The Care of the Patient," in which he described the philosophy of medicine he had pursued as a student, researcher, teacher, administrator, and physician. For him, the doctor-patient relationship could be successful only if the doctor was a complete physician, combining human qualities with scientific knowledge and approaching the patient as a total person who happened to be sick. Dr. Peabody told the following to students at the Harvard Medical School:
What is spoken of as a "clinical picture" is not just a photograph of a person sick in bed. It is an impressionistic painting of the patient surrounded by his home, his work, his relations, his friends, his joys, sorrows, hopes, and fears. . . . Thus the physician who attempts to take care of a patient while he neglects his [emotional] factor is as unscientific as the investigator who neglects to control all the conditions that may affect his experiment. . . . The treatment of a disease may be entirely impersonal; but the care of the patient must be completely personal . . . . One of the essential qualities of the clinician is interest in humanity, for the secret of the care of a patient, is in caring for the patient.
Less than a year following his lecture and its publication in the Journal of the American Medical Association, Dr. Peabody died at the age of forty-six. It became obvious that he had begun to lecture and write about the care of patients after he knew that he himself had cancer.
What you can do
So much for the doctor's perspective. What can you do to ensure that the human stage is set between you and the doctor so that you get the competent and compassionate care you want and deserve? Here are several points to keep in mind.
Before the visit: Identify the main problem
It is helpful to prepare for the visit by thinking through, or even writing down, what the main problem is that you have experienced. The doctor will call it your chief complaint (such as pain). Be ready to tell him/her the first symptoms that occurred: "I was perfectly well until three weeks ago when I developed stomach pains. They have come and gone and I haven't been able to go to work." This tells the doctor rapidly how long you had the symptom, how severe it is, and that it is interfering with your activities.
Keep A Medical Notebook
It is important to have your information organized so that you can express it succinctly. I strongly suggest that you bring to all the visits a small personal notebook in which you keep a record of prior doctors' visits, medicines you have taken, when X rays were taken, and tests dates and results. Over the years, it is remarkable how hazy dates of tests and illnesses become. At Memorial Sloan-Kettering Cancer Center, patients are given a small notebook, called a Medical Passport. About the size of an official passport, it has a pocket inside for your health insurance cards, a list of your doctors' and pharmacy phone numbers, and any other information you need to keep readily available. Kept at home, this notebook helps you prepare for each visit to the doctor. For example, if you have been taking medicines prescribed by another doctor, you need to note the name and dose. Bring the bottle of pills along to the doctor's office to take the guesswork out of figuring out exactly what you have been taking; this eliminates the need to say, "You know, the little red pill," with all it's potential for inaccuracy. Working together is the name of the game.
The First Five Minutes
Your doctor may be absorbed in reading your file or may seem too hurried to respect the social amenities, so it may be helpful for you to set the stage, and greet the doctor, shake hands, and introduce yourself:
I'm Ms. _________, and I'm here to see you because of a problem I've been having. It is a cough I've had for the past three weeks, and I'm concerned about it.
Your preparation for the visit, as we have just discussed, will make the first five minutes easier. Questions from the doctor will be fewer when you have all the facts clear in your mind and can express them succinctly. This short period often sets the stage for the quality of communication between you and your doctor. Mutual respect is established, and you pave the way for confidence and trust in the relationship.
Decide How Much Information You Want
Because people have different personalities, they communicate differently, and they need different amounts of information about their illness. People who work in the communications field talk about how individuals can be divided into "monitors" and "blunters." The monitors are people who want all the facts and only feel comfortable when they have them. This gives them a feeling of being in control and lessens their anxiety. The blunters are the ones who want to hear only what is necessary for them to know. Hearing the facts that are not immediately relevant makes them more anxious, and contributes to a sense of being overwhelmed and out of control. You may like the monitors, who say up front, "I want to know all the facts as they emerge. Don't keep anything from me." This person may keep a chart of blood counts or a record of when a test is due to remind the doctor in case he or she forgets. The doctor needs to recognize that you are one of these people and should be willing to share the medical information, almost like talking with a colleague. This partner dialogue is powerful and engenders respect and cooperation. Jack Price, who was a quintessential monitor, said this:
Having confidence in the doctor is one thing, but having a good working relationship is another. . . . it has to be a partnership. Unfortunately, there's no consumers' guide to doctors. . . . I need to have information to make rational decisions. If you go to a financial planner, you aren't going to say, "Here's $100,000. Invest it for me," and then walk out of the room. You're going to sit down and say, "What are the options of places to put it? What kind of rate return can I expect with each? What are the risks?" It's the same with patients. I want the same kind of thing, enough clinical information to make informed decisions about my own treatment.
If you are a blunter, on the other hand, you may say, "I want to be part of this partnership, but I'm not the type who likes to follow my blood counts or PSA levels. I'll do better if you just tell me what I need to know. The overall picture is sufficient for me. The details upset me and make me worry a lot more." If you tell the doctor this, that you aren't a control freak who wants to know all, it will be easier for you and the doctor to communicate in the way you find best. Natalie Spingarn, a twenty-five-year survivor of metastatic breast cancer and author of the book The New Cancer Survivors, talks about "the right not to know." If you feel better dealing with the big picture and leaving the details to the doctor, that is as much your right as the right to full disclosure. It is best simply to tell the physician up front which way you do best. The doctor will use this as a guide in talking with you.
Considering Having Someone There With You
Like some people, you may choose to be alone at doctors visits so that whatever is said is kept confidential. Friends and family should respect this desire. Like others, however, you might find it helpful to have someone with whom you feel comfortable come along to the doctor's office or hospital to listen and discuss what went on. If you feel very ill, upset, or just plain shy, you may wish to have the friend or the relative who accompanies you "advocate" for you with the doctor, to say for example, "My mother's very nervous about the surgery and hasn't been sleeping. Could you give her something to help her sleep?" There is no shame in asking someone to play this role, and it is quite common for a family member, such as a spouse, sibling, parent, child, or close friend to do so. It must, however, be your preference. Should the doctor suggest you speak privately, simply say, "I would like [my daughter] present. You can say anything you need to say in front of her." Another benefit to bringing someone with you is his or her ability to listen along with you. In all the stress of things, and with the significant amount of facts and information that may be discussed, another set of ears, may be helpful when you get home and realize that you missed an important point, or do not remember every aspect of the discussion.
Express Your Concerns
Your care has several different aspects: a rational, informational side, a technical side, and an emotional side. You must be able to express any of your concerns without feeling your doctor might regard them as inappropriate or foolish. You might hesitate to say "I'm so nervous, I'm jumping out of my skin" or "I'm worried sick about what this diagnosis means for my children" because of the ethos that we must be strong. If sexual concerns are important to you, don't let embarrassment keep you from raising the topic. Keep in mind that sexual activity is normal and that doctors can discuss this without the social and personal overtones that keep you from talking about it with others. You must be assertive about bringing up any issues that are important to you without feeling inhibited. Asking for help or expressing your concerns and fears doesn't make you a "wimp" or emotionally weak, so don't let this idea prevent you from gathering all the information you need.
Unfortunately, respect for this aspect of care still takes a back seat. Again, if you have to choose between a doctor who is competent and one who is caring, competence wins out for sure, and you look for your carrying elsewhere. Marian, a sixty-year-old woman with cervical cancer put it this way.
I really can't stand this surgeon. He's rude and ill-mannered. He's not a warm person. But my doctor swears by him, and he seems to really know his stuff. So I figure, if this jerk keeps me alive, I'll get my emotional support from other people.
Nevertheless, you have a right to expect caring as well as expert care. Concern for the human side is not stated in the Patients' Bill of Rights, but it should be. If you feel that your doctor is ignoring your "human side," you may need to say so. Sometimes, the nurse picks up the slack and can give more time to listening and understanding problems. Frequently the doctor counts on the nurse, as part of the team, to pick up on problems that the physicians may have missed. These experienced and highly trained nurses often make "telephone rounds" late in the day to check on patients. This proactive calling is reassuring to someone who is ill and at home, especially if living alone.
Write down your questions
Whether this is initial visit with the doctor or a later visit, after you have had tests and are looking at treatment options, it is helpful to bring a list of questions that express your concerns. This again focuses the discussion on your concerns. The doctor may not raise these issues unless you do.
Get a second opinion
Many people are afraid of offending their doctor by saying that they want to seek a second opinion before they undertake a new treatment. This worry should not be a concern for you with a physician today. If your doctor is offended, that may tell you something that you need to know. Oncologists today, encourage second opinions, and everyone gains confidence on hearing that another has endorsed a decision. Cancer is a disease for which the "first shot" or treatment is the most important, and you want to feel confident when you begin a treatment that it is, indeed, the one that offers the best possible outcome.
Get information on the web
Doctors are getting accustomed to a new role as consultant to the patient who comes in armed with extensive information obtained "on the Web." Many reliable resources are available, like the websites of the National Cancer Institute and the American Cancer Society. You will find more information than you ever wanted when you start to search cyberspace to learn about your cancer and its possible treatments. The downside is that many of the sites are truly uncensored. You get information that's reliable sometimes and highly unreliable and erroneous and other times. The internet is a remarkable resource, but what you learn should be carefully considered and discussed with your doctor, who can sort out the real from the unreal. I have seen people access information from the Internet about treatment protocols for a rare tumor that they would not have been able to obtain otherwise. But I have also seen patients devastated by reading dire statistics about a tumor, without the accompanying interpretation that would have been provided in a face-to-face discussion with a doctor. Use the Internet as a great source of information, but sift out the facts with a physician to determine what is actually applicable to you.
In summary, communication is a two-way process; you can control more of it than you think if you present your problems, thoughts, and wishes clearly, indicating whether you are someone who likes to have all the facts or just the facts needed to make decisions. Be organized and prepared to give the medical facts clearly, keep good records, ask all the questions you are concerned about, and make it clear that good communication, including attention to your emotional well-being, is essential to getting the care you want. Also make it clear that you will take responsibility to make that happen.