Hospital life at Nagoya Health University Hospital
The examination and treatment of patients is not the only role of a university hospital. It also has to carry out research and educate medical students, teaching them how to become good doctors. After studying about diseases in a general way, the students are divided into small groups of six or seven. They make a round of visits to a different department every one or two weeks to examine the patients. They read the relevant textbooks and receive guidance from the doctor in charge of the patients. This is the curriculum called 'porikuri' (polyclinic). Two groups often have to remain in the hospital at night, and sometimes even sleep over in the special 'porikuri' rooms: the students of the surgery-oriented departments, who have to observe operations, and those of the obstetrics department, who also have to attend the birth of babies.
In April, 1980, I finished my doctoral thesis at Nagoya University. I moved to take up a new post at Nagoya Health University Hospital - now called Fujita Health University Hospital - in Toyoake, Aichi Prefecture.
By then Aya required the use of an electric wheelchair, and she could only travel to the hospital by car.
Because Toyoake was closer to her home than Nagoya, she moved to the same hospital where I was now posted.
As I examined Aya in the consulting room at the new hospital, I compared her condition to the day when I had first met her in Nagoya. Her cheeks had been much fuller then, and I had been able to understand what she said much better. Even though she had claimed she was swaying, she was walking quite normally to other person's eyes... After just five years, however, she needed someone to push her around in a wheelchair, she couldn't utter words quickly even though she tried hard, she could only speak by twisting and streching her thin neck, and her way of speaking was hard to understand for someone not accustomed to it... I was shocked by her deterioration.
After leaving the school for the handicapped, Aya stayed at home while the other members of her family were out at work or school. She had lunch on her own and looked after herself. Her mother was worried about possible accidents while the others were out; Aya often fell over inside the house even if she was holding on to something. In fact, every time she came to the Outpatients' Department, she had injuries from falls which had caused internal bleeding on her face, arms and legs. There were more of them than before and they were becoming more serious.
She entered the internal medicine ward on the eighths floor of Building #2 of the hospital in order to have treatment and rehabilitation for the second time. She was the first spinocerebellar degeneration patient in that ward.
There were seven or eight other patients there that I was in charge of, plus some others, all with heart or blood disorders. Many of the nurses were young and some of them were younger than Aya. I had gotten into the habit of calling her 'Little Aya'. It sounded funny to hear the nurses who were younger than her calling her 'Little Aya' as well. But it shows the affection everyone had for her.
Aya operated her wheelchair herself. She washed her face using her disabled hands, went to the toilet, and cleaned the table for meals. She went for rehabilitation without fail, and read books sitting on a chair or on her bed during the daytime. She got interested in handicrafts and the origami that the other patients in her ward were teaching each other. But she was distressed at not being able to do as she wanted. The head nurse was touched when she quietly watched her at those times.
More than anyone else in the same part of the hospital, it was the older patients who were moved by Aya.
They were paralyzed on one side because they had had strokes - their blood vessels had suddenly become restricted or broken. They couldn't move their hands and legs as they wished. They got very annoyed and sometimes skipped rehabilitation sessions. Some of them had almost lost their desire not only for exercising but for life itself. However, when they saw the serious efforts made by Aya, who could have been their granddaughter, they were encouraged to do their own training again. They started bending and stretching their arms and legs on their beds.
Bo th their families and the nurses were pleased. As their doctor, I couldn't ask for more. I had explained the benefits of rehabilitation over and over every time I made a round of visits. I had tried to say various things to motivate them. But I realized that what I said had less effect than the way Aya looked as she pushed herself as hard as she could in her wheelchair.
The examination and treatment of patients is not the only role of a university hospital. It also has to carry out research and educate medical students, teaching them how to become good doctors. After studying about diseases in a general way, the students are divided into small groups of six or seven. They make a round of visits to a different department every one or two weeks to examine the patients. They read the relevant textbooks and receive guidance from the doctor in charge of the patients. This is the curriculum called 'porikuri' (polyclinic). Two groups often have to remain in the hospital at night, and sometimes even sleep over in the special 'porikuri' rooms: the students of the surgery-oriented departments, who have to observe operations, and those of the obstetrics department, who also have to attend the birth of babies.
I feel sorry for the patients who cooperate in this curriculum, but I always ask them because I think it is an important way to foster good doctors. The patients all kindly agree. When the visits are repeated, patients get used to them. They even acquire better knowledge by glancing at the textbooks carried by the students and listening to what the doctor explains to them. Reversing roles, the patients sometimes even teach things to the students in the next group that comes around - which is no laughing matter.
Aya was in the same age group as the students. I was a little concerned about her state of mind, but I wanted the students to get some understanding of her disease. I made up my mind to ask for her cooperation.
She nodded with a wet little smile.
Three students, two young men and a young woman, were responsible for Aya. They carefully examined her and studied hard about her disease. Though their visits finished after one week, one of the men sometimes went to see Aya in the evening while he was studying in a different department. He was blessed with good health and came from the kind of family in which it was only natural to study medicine. I could imagine he was shocked to learn about Aya's circumstances: entering a high school aiming at university study, and then having to move to a school for the handicapped because of her disease. And he knew that the disease was 'slow but progressive.' I was pleased to hear that he found time to visit Aya not just because of his interest in the disease but because of his kindness. It suggested to me he would make a good doctor.
One day, I was walking along the corridor after finishing my round of ward visits. Aya suddenly came out of her ward in her wheelchair, just as if she had been waiting for me. She stopped beside a fire hydrant on the dimly-lit wall and asked me a question out of the blue: "Dr. Yamamoto, can I... get married?" I automatically answered, "No, Little Aya, you can't."
Then I thought for a moment. Why had she asked that question? Maybe there was someone she liked... could it be that medical student who had been visiting her? Thinking I should listen to her carefully, I crouched down and looked into her face as she sat there in her wheelchair. I was shocked to see the look of surprise in her eyes. She had clearly been startled by my firm reply.
Aya was in a state where she had to struggle even over small things, and she knew that her disease was gradually getting worse. I had assumed that she would never even think about marriage in general, let alone think about whether she could get married or not.
Now I realized, however, that reality was different: she had become taller, her breasts had developed, and she was having her period regularly. It always bothered her because it made her sway more. I'd watched Aya grow from a young girl into a woman. So why did I assume that she would never think about getting married and having a family? I felt ashamed of myself. I had decided on that dogmatically. Even though we had been deeply associated with each other for so long, I hadn't fully understood her.
That made me reflect on my conduct. It was the biggest shock that I had ever had from one of my patients. I will never forget Aya's large, shivering eyes and surprised expression at that moment.
I suppose my answer had caught her off her guard.
"Why can't I?" she asked. "Is it because my children would have the same disease?"
"Well, you need someone to get married to," I answered as cheerfully as possible. "First of all, you'll have to find someone who fully understands your condition and will agree to marry you. Do you have anyone in mind?"
It was a very cruel answer. But I didn't want to give her a vague reply that would encourage her to cherish an illusion that would soon be dashed.
I was moved to tears as she shook her head and said, "No." I don't know which came first - her face becoming hazy because of my tears or her eyes filling with tears.
For a while, I couldn't move.
For several days after this incident, I could still hear her voice asking, "Dr. Yamamoto, can I... get married?"
The student who had visited her from time to time gradually stopped going to see her. I suppose he got too busy. Perhaps partly because of that, Aya committed herself to rehabilitation as if nothing in particular had happened. And she seemed cheerful in her ward.
Around the end of her stay in the hospital, Aya began to suffer from orthostatic hypotension. She would get a headache and feel nausea whenever she got up. Then one of the patients in the same room died suddenly. That made Aya's anxiety about dying stronger. She spent several days looking very depressed. Again I explained to her what would happen to her as the disease progressed, but I said it was a long time before she would have to face death herself. She nodded. Little by little, she became cheerful again.
However, she started needing other people to look after her. She moved to a hospital that permitted a caregiver to stay with her. I sometimes go there to see patients in my special field. Later she moved to a hospital closer to her home in Toyohashi.
Although I haven't seen her mother for more than two years, she keeps me updated on Aya's condition. She consults me and a young doctor from my university who has been sent to the hospital where Aya is staying now. So I have a good grasp of how she is doing. I hear she is loved by everyone wherever she goes, and her caregiver looks after her with warmth and compassion.
Whenever my patients with this disease start getting discouraged, I encourage them by talking about Aya. Recently, I've been thinking that in fact I am the one who has been encouraged by her most of all.
Hiroko Yamamoto
Assistant Professor,
(Now Professor)
Department of Neurology,
Fujita Health University Hospital
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