Nine years ago, I graduated from graduate school, After getting a master’s degree in surgery (the direction is general surgery), I am confident that after several years of study and professional training, I can already be qualified for the job of a general surgery resident. However, unfortunately, I did not find the hospital I liked and was reduced to a pediatric surgeon in the children’s hospital when I was desperate and eager to find a job.
Although there was no way out, it was very important for the hospital to be short of people at that time. To the extent of what? In the case of my night shift out of the clinic, once the children who need surgery in the hospital are admitted, I have to go back to the ward to participate in the surgery first, and at the same time tell my colleagues in the outpatient internal medicine department to help me with the surgery for a while and come back after the surgery.
This story happened on a busy night.
An acquaintance of an acquaintance
I remember it was an autumn night when several parents brought a newborn baby.
When the child arrived, his condition was not very good. I was still in the process of physical examination. One of the parents asked me to answer the phone. I stared blankly, but understood.
In this province’s only professional children’s hospital, beat around the bush, they can always find acquaintances, the other side of the phone, is a hospital who who, let me take care of so on and so on. I just started work soon, in fact, I don’t know who this so-called colleague is, just promised to take care of, let parents take away the phone.
The diagnosis is not complicated, anal atresia. Need emergency surgery, I opened the admission form to the parents, and simply explained the prognosis, detailed problems, told the parents to discuss in detail after hospitalization, now go to the hospitalization procedures first, otherwise the child is in danger.
The parents promised to do it immediately and then left the clinic. I then received several more children, nearly an hour later.
I estimated that all the preoperative preparations were finished at this moment, so I said hello to my internal medicine colleagues in the outpatient department and said that I would have an anal atresia operation and help me with it for a while.
Disappeared small patients
What I never expected was that when I trotted all the way to the surgical building, I asked where was the child with anal atresia I had just received? The superior doctor in the ward said calmly with a face that he had gone through the hospitalization formalities and left the hospital after explaining his illness.
Leaving the hospital? Why did you leave? Just when I was puzzled. The [acquaintance] in our hospital called and we had a brief exchange. It turned out that the parents gave up treatment.
Anal atresia is a kind of congenital anorectal malformation, Anorectal malformation occupies the first place in digestive tract malformation, with an incidence rate of about 28,800/10,000 in our country. The operation to deal with this disease is not too complicated, but the problem is, like the situation of the child just now, many times, after the operation, the child can survive, but there may be defecation dysfunction such as fecal incontinence, and the quality of life is worse than that of normal people.
I will never know that the child’s final outcome was how’s, nor will I know that his family made the decision because of what. I don’t want to guess, I can’t bear to guess.
Who is in the interest of children’s autonomy?
We all know that life is sacred, so is imperfect life also sacred?
In the face of children with fatal deformities, surgeons naturally have a sense of mission to try their best to save their lives, but at the same time they must consider the quality of life of the children after being rescued and the autonomy of their parents.
According to the requirement of modern medical ethics, Every conscious adult has the right to decide what what his body should be, An informed consent form is required for surgery (in the United States, the first informed consent form appeared in 1914). However, after the emergence of pediatric surgery, new problems have arisen. Children’s autonomy is completely replaced by adults. Then, who can guarantee that the adult’s decision must be in the interests of children?
The enactment of laws is rigorous, but it is also lagging behind. At present, we have no clear legal evidence to help us judge which choice is right. However, in purely moral terms, which choice is right, can we make it clear?
Human moral standards are not fixed.
In ancient Greece, Plato and Aristotle respectively advocated killing defective newborns. In ancient Rome, strange-looking babies were abandoned. Even in modern times, which was not too far away, infanticide was still a conventional method of population control in some countries. In these contexts, infanticide and murder seemed to be different.
However, human moral standards are not static.
In 1870, the world’s earliest “Baby Life Protection Society” was established. The organization was established to prevent some parents from obtaining insurance benefits through the death of their children through various life insurance policies. Entering the civilized society since the industrial age, they began to realize their obligation to protect the most vulnerable members of the human family.
The judicial departments of some countries have put forward a new view: disabled newborns are considered citizens with disabilities, and the discrimination they suffer violates their civil rights.
In particularly extreme cases, Usually there is not much controversy. For example, If a child with only cleft lip deformity is abandoned by his parents in the wilderness (this is the case in our hospital’s oral surgery department), If others find out and send it to the hospital for treatment), I am afraid it will be unanimously condemned. On the contrary, if a child with multiple severe deformities is saved, the prognosis will be a completely painful and miserable life. In this case, abandoning treatment may win the support of the majority of public opinion.
However, it is hard to say how to choose the right choice for a large number of moderate deformities between the two.
There is no right or wrong, but one cannot stop thinking.
Because of the particularity of pediatrics, pediatricians obviously face more [perfect or dead] choices than other colleagues. Based on different positions, our values may conflict with some parents.
The positive view is that:
In developed countries, the principle of “maximizing benefits” has the upper hand in the field of pediatric ethics, which advocates that doctors and doctors should create the greatest benefits for patients to ensure that the lives of disabled children are not underestimated. Its main feature is to take children as the center and completely ignore the impact of children’s disabled lives on other people (parents and society).
However, opponents believe that:
The interests of the baby are unknown, and in fact there is no abstract maximization of the interests of the baby. The realization of the interests of the baby itself also depends on the family. It cannot always emphasize that the family has the obligation to provide necessary support for the child, while ignoring the right of the family to make important decisions for the child.
After making any medical decision, the consequences will only be borne by the family. Then, how can others be entitled to be generous at the expense of others? When discussing the principle of maximizing the interests of children, if the family factors are excluded, it is really contrary to the core goal of protecting the rights and interests of children.
Can we make what change [reality]?
As things stand, If an imperfect life is born in a developed country, its probability of survival is obviously higher than that of being born in a less developed country under the same circumstances. A considerable part of those lives that have been saved through active treatment lead meaningful lives. However, those who have to give up treatment due to severe deformities can only be regarded as stop losses.
A family unwilling to bear the burden of caring for a severely disabled child is not necessarily selfish, but rather realistic.
As pediatricians, there is very little we can do: frankly provide parents with as accurate prognostic information as possible.
For example, when treating patients with Down’s syndrome, the information to be provided is that the average age of death of children was 25 years old in 1983, but it was raised to 49 years old in 1997 (judgment based on the current medical level is likely to be inaccurate, so we should pay attention to clarifying and updating our knowledge).
If the success rate of a deformity correction operation is high and the burden is small (as in the case at the beginning of this article), but the parents refuse, In the United States, they are likely to face lawsuits and be accused of medical inaction. The government will force them to have their children undergo surgery. In our country, it has never been heard that giving up treatment for a deformed newborn will lead to what consequences. In a country where child abuse seems difficult to effectively ban, this issue is too advanced.
When you face this kind of problem, what will you do?
How will communication be explained to the family members of the children?
Do you think life itself is more important or the quality of life is more important?
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