We are symbolic creatures limited in knowledge and action by the language we share. Words are the primary symbols we use to construct a picture of reality and to communicate the meaning of our existence. Thus, language shapes our reality and compels us to act accordingly. However, words can be frustrating and language confusing. Perhaps this is why so many of the great philosophers chose to tell stories. Stories transcend language and convey their essential truths even when isolated words are not understood. Stories serve as guiding stars for individuals living in complex societies. Plato used dialogues; Shakespeare produced plays; Jesus taught in parables; C. S. Lewis wrote children's stories. Faced with the complex task of making ethical decisions in the midst of modern medicine, I offer a story.
We ducked out of the blazing sun and into the darkness of Doña Rita's thatch-roof house. Little Enrique let go of my hand and threw himself on the floor alongside his brothers and sisters, sending a hen squawking and flapping from beneath the cornhusks. The turbulence flared the kitchen fire and sent smoke swirling around the silhouette crouched beside the hammock. The hammock held a little bundle causing it to scrape the dirt floor with each gentle pass. I knelt beside Doña Rita and peered down at Baby José. How could I explain? Baby José was dying.
I had spent hours listening to his little heart gurgle. A university education and 3 years of medical school and all I could do was play with my stethoscope. Doña Rita took Baby José into her arms and pushed him into my chest. This was Doña Rita's 11th time giving birth, and it will be the fourth time for her and Don Martin to watch one of their children die. Doña Rita put her face to the floor and began to cry; her children scooted closer. Enrique unwrapped a burlap package revealing the only book his family owned. Thanks to a few lessons under the mango tree, Enrique was the most educated member of the family; when he read he felt his mother's joy. He began sounding out words, "El amor . . . "
I adjusted my stethoscope and listened—"always protects, always trusts, always hopes, always perseveres. Love never fails." Enrique had been practicing and the words flowed smoothly. Baby José's brown flat eyes gazed into mine; he had the characteristic moon face of Down syndrome, but lacked the happy drool and sparkling eyes. A confident pediatric heart surgeon back home would have fixed Baby José and had him smiling again in no time. But in this country, where young lives were taken by malaria, dehydration, respiratory disease, and infection, Baby José was beyond medical hope. Three years of medical school, and I could only listen with a stethoscope. "Where there is knowledge, it will pass away . . . now these three remain: faith, hope, and love. But the greatest of these, es el amor." I removed the stethoscope and looked over at Enrique; a boy of 10 years, who had never been to school, had just taught me one of life's greatest lessons.
After morning rounds my attending sent me to room 4312. I took a deep breath, knocked, then entered. A proud new father jumped to his feet and bravely reached for his wife's hand. "Your baby is going to be fine," I announced. The parents exhaled. "We know why your son has problems eating. Food cannot pass from his stomach to the intestines because he has duodenal atresia."
"Can anything be done?" the father interjected.
"Yes, the problem is correctable with surgery." The parents were visibly relieved.
"Why don't we sit down," I offered. "Anatomical defects like the one your son has are often associated with chromosomal abnormalities." I paused. "After our initial exam it appears that your son has a genetic condition known as Down syndrome."
"Down syndrome?" the father interrupted. The new mother squeezed her husband's hand.
"Yes, your little boy likely has an extra chromosome 21. Children with this genetic condition have special medical and educational needs. With the advances of modern medicine we are able to manage this condition quite successfully. Many people with trisomy 21 live to reach age 40. They hold jobs and enjoy good relationships with family and friends."
"My son has Down syndrome!" The father was flushed with anger, and the tremor in his voice evoked a rush of tears from his wife.
"I know this comes as a shock to you and that the adjustment will be difficult. I brought you some literature that you might want to read to help you understand your son's condition. In addition, I have included the names of a few parents who also have children with trisomy 21. They would love to share their parenting experiences. Please give them a call if you wish. The most important thing for us to do now is that which is best for your baby. I will give you some time to read this material, and then I will return to answer questions. Study the consent forms for your baby's surgery. The surgery is very important; he may die without it. We will talk more about the procedure and the consent forms when I return."
Later that day, as I prepared for evening rounds, I overheard the nurses talking: the parents did not want to sign the consent forms for surgery. I sat down heavily. I understood. The parents, like my parents, had expectations—career, home, investments, and finally a family. The birth of a disabled child shattered the dream of the perfect family. I stood up to join my team on rounds.
"Student Dr Clark," my attending focused her attention on me. "The parents of Baby Joe feel that they are not prepared to raise a child whose quality of life they believe will be impaired. They have requested that no further medical intervention take place. What ethical principles should we apply to this situation?"
"Autonomy, beneficence, nonmaleficence, justice, double effect," I started to recite the standard answers that allow most medical students to score a passing grade in ethics.
She queried, "Have you ever heard of Baby Doe?"
"Yes, Baby Doe was born in the 1980s with Down syndrome and esophageal atresia. Baby Doe's parents declined surgical intervention and allowed their child to starve to death. As a result, the definition of child abuse expanded to include the failure to provide necessary medical treatment. In addition, the Baby Doe regulations state that the prospect of a disability should play no role in treatment decisions."1
"Student Dr Clark, how should we then handle this situation?"
"If this was a television drama, we would send a memo to the ethics committee, threaten the parents with a maximum sentence of 10 years, and make the child a ward of the state. In a court of law, a judge would then rule that being born with Down syndrome is not a reason to condemn Baby Joe to die. We would then perform the surgery and save the life of Baby Joe."
My attending asked, "Why do we not respect the autonomy of the parents and their right to decide what is best for Baby Joe?"
"We do. Even the presidential commission that was convened to address the case of Baby Doe recognized that there is no absolute obligation to sustain life. It was found that no individual is entitled to all of a family's resources nor those of society.2 However, this is not a case of a severely ill and malformed infant who requires heroic efforts and enormous resources for a chance at a limited life filled with pain and isolation. With minimal medical attention, Baby Joe will have what those born without an extra chromosome have: the chance to experience all of the joys and sorrows of life. By agreeing to not treat Baby Joe, we concede that imperfection is grounds to deny a person of fundamental rights. We should not condemn a child to die only because he falls short of parental expectations."
"Should we thus act like they would on television?"
"No, a court order does not provide Baby Joe with a loving family. Surgery is needed, but the parents have their needs too. The parents have suffered a tremendous loss, they were denied the son that they expected. We should give the parents a chance to be good parents, to love and enjoy their baby. Even without the duodenal repair, we can keep Baby Joe healthy for a few days. We will use that time to give the parents space to grieve, and then introduce them to the other parents in the community who are raising children with Down syndrome."
The next morning with my stethoscope around my neck I carried Baby Joe to room 4312. I arranged the chairs so that mom and dad had to sit close to Baby Joe and me. From my coat pocket I pulled out a picture of Baby José swinging in his little hammock and I told a story about a baby named José who lacked the opportunities for medical care afforded to babies born in the United States.
"If you are real quiet and listen real hard, you can hear Enrique slowly read about faith, hope, and love." I handed my stethoscope to the new father. "Listen," I said softly.
The new father pulled the baby to his chest and adjusted the stethoscope over his son's heart. The mother squeezed close to her husband and stared into Baby Joe's eyes. "I can hear it!" exclaimed the dad with joyful tears. Mom kissed her husband and reached for her son. I looked at Baby José's picture and said softly, "but the greatest ethical principle of all, es el amor."
