Dr.
Lai Chi-wan, dean of the Tzu Chi College of Medicine and
vice president of Tzu Chi University, illustrates in this
article how important it is to maintain a friendly and
respectful relationship between patient and doctor.
In September 2000, I returned to Kansas City for my
son's wedding. While sorting through some old letters in
my study, I picked up a letter written to me five years
ago by a patient with epilepsy. He complained of how he
had been mistreated because of his illness.
For fifteen years, he had been working as a janitor in
an elementary school. During that long period of time, he
had only three seizures while at work. Other seizures
occurred while he was sleeping at home or when he woke up
at the crack of dawn. But a new principal transferred him
to a cleaning unit on the grounds of safety.
Although many physicians claim they have a fair
understanding of epilepsy, this young man believed that
doctors never sense the frustration that patients with
epilepsy feel due to unfair treatment and discrimination
against them. He wrote me a letter in which he said,
"I do not ask to be treated in a special way because
of my problems... I do my job to the best of my ability,
so please let me advance in my work like everyone
else."
I remember a long talk I had with him after I received
that letter. "You know, when other people have a car
accident, the policeman or the insurance agent doesn't ask
any questions about their personal health," he said
to me cynically. "But when it happens to an
epileptic, the first question they ask is whether the
accident was due to his epilepsy, and the doctor asks if
he forgot to take his medicine. It's incredibly
unfair!"
As I recalled this conversation of so many years ago, I
suddenly had an irrepressible desire to talk to him. I
wanted to find out how he had been recently. I picked up
the phone and called the information operator, trying to
find his telephone number at his old address on the
envelope. Unfortunately, he had moved. But he had an
unusual German surname, which I had never heard before or
since during my twenty-some years in the United States. So
I called the operator again and explained to her the
reason I wanted to speak to this gentleman.
The operator, apparently moved at hearing that a
physician wanted to find out how his old patient was after
having left the United States for two years, very kindly
told me that she would try the areas around Kansas City
one by one. Surprisingly, in less than five minutes she
phoned me back, happily telling me she had found one
family with this unique surname. She said that since this
last name was rare, even if this was not the family I was
looking for, they might be related and I might still find
my patient by tracing through this family. She wished me
good luck in finding him, and said that she envied him for
having a caring doctor like me.
Fortunately, when I dialed the number, it was exactly
the patient I was looking for who answered the phone. He
amazed me by asking if I was Dr. Lai before I had the
chance to tell him who I was. He had moved in with his
parents.
I had last seen him two and a half years ago at a
summer camp, during which my patients had held a farewell
party for me before I returned to Taiwan. And now two
years later, he was still able to identify my voice. This
touched me deeply. He
immediately called out to his parents that Dr. Lai was
calling from Taiwan. Soon his parents were talking to me
through other extensions. I said that I guessed my
Taiwanese accent hadn't changed, so they were able to tell
who I was immediately! I explained to them that I was not
calling from Taiwan. I had returned to Kansas City and
would spend several days there. They talked to me for
quite a while and asked my opinions about some new
advances in epilepsy treatment.
Suddenly, my patient said, "Dr. Lai, we miss your
doughnuts!" This reminded me of a special anecdote
about doctor-patient relationships. Several years ago,
this young man's epilepsy could not be completely
controlled. He would have three or four seizures a month.
I advised him to consider an operation. The first step was
for him to be hospitalized for video
electroencephalography (EEG) to record his brain waves
during epileptic attacks so that we might spot the exact
location where his abnormal brain waves were coming from.
After this, we could decide if an operation would be
feasible or helpful. But three days after he was
hospitalized, we still had not recorded any seizures. So I
reduced his drug dosage in order to induce one.
Unfortunately, after we recorded three major attacks and
resumed the original dose, his condition could not be put
back under control. Eventually he fell into status
epilepticus, a condition of continuous seizures with total
unconsciousness, and he was sent to the intensive care
unit.
His family could not accept the fact that this lively
young man, after hospitalization, had become comatose and
had to use a respirator. We used several first-line
anti-epileptic injections to control his condition, but to
no avail. Finally I decided to use propofol, a new kind of
anesthetic which I had learned about during my sabbatical
leave at the Institute of Neurology at Queen Square,
London.
When I made the proposal to his parents, his mother was
adamantly against it. She complained that they had sent
their son to our hospital in order to record his brain
waves, and they had never expected that he would end up in
this tragic situation. She told me not to propose any new
therapy whatsoever, because she would not accept it. But
his father was more reasonable. He said he knew I was
trying to help their son and he did not blame me, no
matter how it turned out. He said that since I had tried
my best but still could not bring his son back to
consciousness, he would trust me with the treatment I
proposed. He believed that I would make the decision most
beneficial for his son. He then asked me to give him and
his wife some time to discuss it between themselves. About
ten minutes later, they came back to me with the decision
to try the new method as a last resort.
Fortunately, the epilepsy was brought under control.
Two days later we gradually reduced the anesthesia and the
patient regained consciousness. I remember the first
sentence he uttered after waking from a week's coma:
"I miss doughnuts." I was excited to see that he
had woken up. I told him that he would be allowed to eat
the following day, and I would ask the kitchen to provide
doughnuts for his breakfast. The next morning on my way to
work, I drove by a bakery noted for its good doughnuts. On
a whim, I pulled over and bought some. I will never forget
the grateful looks that he and his parents gave me when
they received them.
I had felt uneasy the whole week the patient was in
that coma. I could not bear to see that his mother, a kind
old lady, had suddenly grown so hostile towards me. But I
knew that if this young man were my own son, I would
probably have reacted in the same way. He had almost
become a vegetable because one of his silly doctors wanted
to suppress his illness by purposely inducing seizures. It
was certainly hard to accept such a situation.
This is a common dilemma we epilepsy specialists often
face: if we cannot record the seizures, our preoperative
localization of the lesion cannot be accurate and the
evaluation of an operation and its outcome will not be
effective. Sometimes the only way to record the seizures
is to reduce the dosage or discontinue the treatment.
Nonetheless, discontinuing or reducing the dosage too
quickly can cause too many seizures, which are dangerous
for the patient. Although I did not consider myself wrong
from a medical doctor's perspective, I could not help
worrying about the possibility of getting myself into big
trouble. After all, it was and still is common in the
United States for doctors to become involved in
malpractice litigation. I believed that many of my
colleagues were also holding their breath for me.
I will always remember the day the patient was
discharged from the hospital. His mother gave me a big hug
and tearfully asked me to forgive her rudeness to me while
her son was in a coma. She also said that she would never
forget the delicious doughnuts I had bought for her son.
After that, I continued to treat him for several years,
until I left for Taiwan, despite the fact that he
ultimately did not receive an operation because the brain
wave recordings showed that he was not a good candidate
for one. Neither could I find an effective medicine that
would completely control his epilepsy.
After I moved back to Taiwan, I received a card from
his mother. Out of all she wrote, there was one sentence
which truly touched my heart: "Thank you for always
being there when we needed you..." This gave me great
encouragement, and also demonstrated to me the delicate
relationship between a doctor and a patient and his
family. I miss this patient and his family, and I am
grateful to them for reminding me to pay attention to how
the patient and his family feel. I have to admit that it
was something I had often ignored in the past. They
enlightened me in my medical career to be more sensitive
to the psychological and emotional needs of patients and
their families. They enabled me to call my students'
attention to the importance of mutual respect between
patients and doctors.
Today I share this story with you because I believe
that if doctors and patients in our society treat each
other amicably and with gratitude, medical teams will draw
from the caring atmosphere and thus attract more loving,
talented people to join them. Only in this way can medical
development in Taiwan and abroad have a brighter future. |