Learning from Students’ Experiences
After all, I know the pain best.
Many physicians relate stories from their youth with a common theme: There was a serious or dramatic illness in their family, sometimes their own illness, and a good or bad outcome or experience with the medical care. They were involved in the drama; it had its effect on them and their lives. Part of who we are as physicians is a reflection of our experiences.
Many physicians had good role models, impressive people who had spe-cial skills, “a nice bedside manner,” performed what seemed like a dramatic rescue from a serious illness, or simply developed a relationship with the physicians-to-be, often long before they ever thought about a career. Some models may have been bad ones, moving the prospective physician to de- clare, “When I become a doctor, I will do it better.” Everyone who becomes a physician has experiences upon which to draw in order to become a good doctor. From the human standpoint, students may be at their best when they are involved not as physicians-in-training but rather as patients or family members, relating at the level of their most genuine feelings and un- tainted by the jargon and patterns of medical thinking.
Here’s the proof. To provide beginning data for the “Seminar in the Hu-man Side of Medicine” at Macalester College, I give my students this writ- ten assignment:
1. Tell the story of an illness that you or a family member experienced.
2. How did you or the family member handle it? What was it like for you or the family member or all of you? What was the best part? What was the worst part?
3. What do you learn from your reflections?
I am always struck by the variety of illnesses the students have experienced and the depth of their reflections. Among the illnesses they have person- ally had are diabetes, hyperthyroidism, traumatic rupture of a kidney, ulcer- ative colitis, Crohn’s disease (an inflammatory disease of the intestine, also called ileitis), depression, Hodgkin’s disease (a malignancy), seizures, Bell’s palsy (paralysis of a facial nerve), and appendicitis. Their family members have had strokes, heart disease, pneumonia, emphysema, and cancer. One student even told of her dog’s malignancy and its impact on her and her family.
Most have received fine care, but some have faced erroneous diagnoses, prejudice, despair and desperation, loneliness, hopelessness, helplessness, and thoughtless professionals. From their experience, they have learned that so much important information about patients and their families is overlooked, that there are universal qualities to illness, that people have different strengths and ways of dealing with a crisis or dilemma, that illness is a family affair, and that uncertainties surround most illnesses. Here are some of their insights.
Of her illness, Crohn’s disease, a junior wrote of complex feelings and her disappointment with some of her physicians’ actions.
At 14, I was still highly uncomfortable with my body—The weekly procedures and diagnostic testing were unbelievably awkward and embarrassing. . . . I followed [the doctors’] orders, but with the intention that I would soon return to normal. When [the symptoms] didn’t leave, I added resentment to my feelings of invasion, awkwardness, and discomfort….I force myself to rationalize the need for my con- tinual doctor visits…. However, in all of my rationality, I cannot rid myself of the feeling of indignation and annoyance at physicians who are allowed to invade and control my body. Physicians must realize the sacredness of personal space and of in- dependence and should be aware that some [patients] cherish those immensely.
A senior wrote about her back and abdominal pain, undiagnosed for years, despite multiple tests. Physicians did not believe her; they dis- counted her pain. Among the worst things that can happen to a patient, she learned, is a sense that physicians mistrust her observations about her own body. “My anger [with physicians about their inability to diagnose the cause of the pain] somewhere along the way was turned into energy. If no one could tell me the problem, I would have to learn as much as possible so one day I could diagnose myself. After all, I know the pain best.”
A sophomore felt the impact of her younger brother’s illness and death from a brain tumor on her (she was 9 at the time), her family, and the medi- cal staff.
Even through countless spinal taps, surgeries, treatments with potent drugs, and days and nights in the hospital, [he] amazed everyone he came into contact with. He was cheerful and brave and sweet and optimistically drew pictures of himself beating up the bad cancer cells…. [After he died] I refused to talk about his death with anyone, and I never cried. I was enrolled in several counseling sessions, which I refused to attend…. The images I keep in my head have not faded in the ten years since his death. I remember seeing nurses cheerfully joke with him in his hospital room, and I watched as they went around the corner to cry. I saw doctors weep openly with my family as they talked about his prognosis. At age 9, these images taught me that adults, even nurses and doctors, were not immune to sorrow, and that they couldn’t make everything better in the end after all.
In recalling her grandmother’s illness, ovarian cancer, a senior discov- ered that each family member experienced the illness in different ways, that the drama of the illness became part of the larger drama of family life, and that it is important for families to care for the one who is ill, but equally important to take care of each other.
Perhaps her final gift to us was to unite and bind us all [together] like we hadn’t ever been before. We learned how to take care of each other. I learned how to listen to someone, even when she can’t speak. I think in today’s society, we are raised with a focus on individualism, independence. That sense . . . is blown apart when you don’t have any control over what is going on around you. I learned from this expe- rience that in times of uncertainty, you need to lean on people, become dependent, and that that’s okay to do.
Illness provokes fear, not limited to the patient. Recalling his childhood seizure disorder, a junior wrote:
My dad once told me that he had never been so scared in his life as he was when I started having my seizures….I learned that people who suffer from illnesses, espe- cially kids, are incredibly dependent on family members for support and assistance, and that those people who provide the assistance have their own fears and doubts regarding the illness. Sometimes, these even surpass the fears and doubts of the pa- tient.
In telling the story of his grandfather’s heart surgery, a senior understood that the physician ought to be more than a technician.
During the period of time leading up to the surgery, [my grandfather] frequently ex- pressed frustration with his physician, who did not seem to spend much time with him or explain what was happening in easily understood terms…. After the sur- gery, [he] had the challenge of both recovering his strength as well as coming to terms with the fact [that] he would not be able to be as active as he was prior to the operation…. My grandfather’s postoperative experience also served as a reinforce- ment to my long-held belief that although it is important to take care of the body, the mental state of a patient can have a profound effect on his or her physical con- dition and recovery as well. The mental aspect of patient care is easily and fre- quently lost in allopathic medicine.
Insights come from all kinds of illness, common and rare. Too often, we define a person by a single attribute. Physicians’ goals are to learn all that they can about each patient. The teacher’s task is to reinforce the desire and the ability to get the details of each patient’s story. The following story teaches the importance of discovering more about the person because that information helps to plan treatment. Of her grandmother’s obesity, a junior wrote:
Her condition is disabling and prevents her from any physical activity, with the ex- ception of walking distances less than one block. Her lack of exercise has caused complications related to her obesity, such as diabetes and chronic digestive prob- lems. . . . My grandmother’s illness stems from psychological issues which were never addressed. She grew up during the depression with not enough to eat. She tells stories of being hit before being put to bed so that she would feel pain, not hunger. She tells of teachers who told her mother she was too thin and should eat more; her mother responded by saying she already ate like a horse and did not need more food. And still, fifty to sixty years later, these stories bring tears to my grand- mother’s eyes.
Quite obviously the causes of my grandmother’s illness have not been properly addressed. Perhaps doctors have only advised remedies, such as diets she will never follow and exercise she will never do, without addressing the causes of her illness. Or perhaps my grandmother is too afraid to face her fear of not having enough to eat. Her fear is understandable when you consider that her generation was taught that psychological weakness or illness was shameful and should never be acknowl- edged.
A recurring theme in many of the students’ stories is the intertwining of the physical and the psychological. A senior wrote of her experience with ulcerative colitis:
Over the following six years [after the diagnosis], I underwent a number of “re- lapses,” which resulted in repeat hospitalizations, and another half-dozen major surgeries. Complication upon complication arose, from excessive scar tissue for- mation to postsurgical abscesses, and it seemed I would never lead a normal life. Somewhere in my midteens I began experiencing what I now recognize as clinical depression, likely resulting from my chronic ill health on top of a difficult home life. I strongly believe that the hardships I faced both emotionally and physically existed (and perpetuated one another) in a cyclical fashion. In an odd way, how- ever, my struggle with ulcerative colitis changed my life in more positive ways than negative ones.
A sophomore’s experience teaches us that even young people can han- dle the challenges of illness. Yet the concerns of chronic illness continue to preoccupy them and their families.
In terms of emotions, I would have to say that the best part of my experience with diabetes for both my family and for me has been my ability to take responsibility for my own health, even at an early age. I believe that my own initiative took much of the worry off of my parents onto me. However, my parents recently admitted to me that there has always been a corner in their minds that is devoted purely to worry- ing about my health and dreading the possibility of their daughter dying at an early age. This worry has been with me personally for many years, taking on more or less significance depending on my stage in life. In a nutshell, the best part of this expe- rience has been hope; and the worst part has been fear.
Some students even had insights about how denial and guilt may be part of patients’ stories. Of his experience with diabetes, a senior wrote: “Al- though these symptoms [blurred vision, thirst, frequent urination, weight loss] were clearly not normal, my mom seemed to refuse to believe some- thing was wrong…. My mom at one point told me that I could have died from her negligence and that she felt very remorseful for not acting appro- priately.”
When her brother, a third grader, broke his leg in a sledding accident and required surgery, a junior learned that unless the medical system and the physician attend to the human side of medicine and keep an open mind, the patient and the family can suffer needlessly. One unsympathetic hospital staff person regarded her brother as “being a baby” for complaining about pain; the pain was real and was caused by an orthopedic pin that needed to be readjusted.
My mother… felt like she had to monitor everything that went on and keep ask- ing questions and checking everything out…. [My brother’s] time in the hospital has convinced me that someone who is seriously sick or in the hospital needs to have a person, a guardian so to speak, to ask questions…. The person who is sick may be incapable or too close to the situation to do it by himself.
Collectively, these students’ stories supply sufficient content for a course about the human side of medicine. They are more dramatic than any tabu- lated information and valuable lessons for any doctor. The ease with which the students tell their stories in a trusting environment provides a model for a trusting relationship with a physician. The students’ reflections vali- date their innate humanity and sensitivity and help to define part of the teacher’s task in the training of physicians: to nourish and reinforce those qualities and do nothing to subtract from them.
These last chapters suggest many of the elements of what it is like to be a patient. In the next chapters, I will explore two of them in depth: uncer- tainty and how patients and their families deal with illness.