Moral and Ethical Decisions: To Be or Not to Be. The 39th Walter J. Zeiter Lecture

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Abstract 

Strax TE. Moral and ethical decisions: to be or not to be. The 39th Walter J. Zeiter Lecture.

Throughout history, some societies have short-changed the weak, the elderly, and children with disabilities. In this lecture, I will explore some of the sad statistics related to dealing with people with disabilities, as well as attitudes toward, and treatments of, children and young adults with disabilities during the past 70 years. I will follow this with some suggestions for change in our society’s attitudes toward this vulnerable population.

Key Words: Ethics, Rehabilitation

I WANT TO THANK the awards committee, the Board of Governors, and the members of the American Academy of Physical Medicine and Rehabilitation (AAPM&R) for selecting me to present, with great humility and much pride, this 39th Walter J. Zeiter Lecture.

Dr. Zeiter (fig 1) was one of the founding fathers of physical medicine and rehabilitation. He graduated from medical school in 1934 and started the Physicians Therapy Program at the Cleveland Clinic in 1938. He served as executive director of the American Congress of Rehabilitation and Medicine for 20 years and of the AAPM&R for 22 years. He was among 11 founding members of the American Board of Physical Medicine and Rehabilitation (ABPMR); he became the Board’s second chairperson, succeeding Frank H. Krusen, MD.

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• Fig 1. 

  Dr. Walter J. Zeiter.

Before I begin a discussion of moral and ethical decisions, something that we usually learn from our parents and often modified by our culture and our friends, I want to pay tribute to some very special people.

First, my very special lady, Tyna Lindsay and, of course, my children, Heller and Joshua, and my 4 grandchildren, Sophie, Kole, Jonah, and Seth. And I would not be here today without the help of 4 special heroes: (1) Howard A. Rusk, MD, who secured for me a place in the New York University School of Medicine by personally opposing a dean who was reluctant to admit me; (2) Paul Corcoran, MD, who, when as chief resident confronted a frightened third-year medical student who had never drawn blood, rolled up his sleeve and became the first person from whom I ever drew blood; (3) John Ditunno Jr, MD, who persuaded ABPMR to accord me the same accommodation that the National Board of Medical Examiners had by permitting me to enter my answers directly into the test booklet, rather than by trying to fill in the tiny boxes on a computer sheet; and (4) Dorothy Glass, MD, my first employer and later my chair and mentor, who taught me how to be a leader. I am also deeply indebted to my residents and patients for what I have learned from them.

A society is measured by its ability to care for its weakest members—children, the elderly, and people with disabilities. Having the skills and technology needed to accomplish this makes that society stronger. When a society abdicates its responsibility to its weakest members, it begins to decay. One task of the warrior class in ancient Athens was to take care of the weakest members of that society, while the task of the warrior class in Sparta was to cull them in the belief that it was necessary in order that the society could survive. There is no Sparta today.

Our own society should be on guard, for currently we are trying to balance our national budget on the backs of the poor, the elderly, and those with disabilities.

Every lecture needs some statistics. Here are mine.

Physical injuries, sexual violence, and isolation from loved ones, as well as financial and emotional abuse, disproportionately affect children and adults with disabilities. One study cited by Kaiser Permanente found that 62% of women reported some kind of physical, emotional, or sexual abuse. According to the U.S. Centers for Disease Control and Prevention, rates of sexual violence range from 51% to 79% among women with disabilities. The rates of sexual violence for adults with cognitive disabilities range from 25% to 67%, depending on the state. One study found 92% of women with disabilities sustained blows to the head and 40% lost consciousness during the assault, leading to traumatic brain injury.¹⁰, ¹¹, ¹²

We physiatrists must always consider the possibility that our disabled patients have a sexually transmitted disease (STD). Disability may mask STDs and delay diagnoses and treatment. This is especially true with patients who have decreased pelvic sensation. In these cases, the disease may present as increased spasticity or autonomic dysreflexia; in many cases, the symptoms are thought to be those of multiple sclerosis, arthritis, or chronic pain. It may also be assumed that the symptoms are related to a change in medication. Appropriate examination and the correct diagnosis may be prevented because of occupational barriers. Many health care professionals have fallen into the trap of assuming that their patients are sexually inactive, when in fact they are extremely active and at very high risk of being infected with an STD or of becoming pregnant.¹, ¹³, ¹⁴, ¹⁵, ¹⁶, ¹⁷

According to the U.S. Equal Opportunity Employment Commission, 75% of Americans with disabilities do not need special accommodations at the worksite. Seven percent require no cost accommodations. Of the remaining 18%, roughly 56% of accommodations cost less than $500. Twenty-eight percent cost less than $1000 and 16% cost more than $1000. Only 0.2% of accommodations cost more than $5000.¹, ⁷, ⁸, ⁹

Without education or employment, people with disabilities are doomed to live in poverty. In 1977, only 8% of Americans between the ages of 25 and 65 without a disability lived in poverty, compared with 28% with a disability and in the same age group. These data show that, without workplace accommodations, employment programs, and education for people with disability, they will remain in poverty. People with disabilities earn less per hour and work fewer hours a week than do people without disabilities. The average household income of people with disabilities is 75% below that of people without disabilities.¹, ⁷, ⁸, ⁹

How about the medical symbols? Do they reflect our attitudes? The one on the left is the staff of Aesculapius with a single snake curling around it (fig 2A). The one that many people use today has 2 wings and 2 snakes (fig 2B). The wings are really the wings of Mercury—a symbol of commerce and not health care. The federal government and health maintenance organizations may be right that the correct symbol is the dual-winged staff.

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• Fig 2. 

  (A) Staff of Aesculapius and (B) caduceus.

In medieval times, physicians did what they could to care for the sick and dying. Occasionally, during severe pandemics, some physicians fled, as did other members of the society. During the 13th and 14th centuries, Europe was ravaged by the bubonic plague. Some of the finest physicians of that time fled the plague and were never forgiven. Children could be heard singing “Ring Around the Rosie,” which graphically recounts the plague. Today, our children still sing:

Ring around the rosie,

Pocket full of posies.

Ashes, ashes.

We all fall down … [dead].

In the 1980s, when the acquired immune deficiency syndrome (AIDS) epidemic began, some physicians refused to treat AIDS patients. I remember a surgery department demanding human immunodeficiency virus (HIV) testing for all patients. That same department refused to test its surgeons. School children were denied admission to schools because they were HIV-positive. Remember the 1980s and 1990s? Think about it. Did you believe that all teachers, all doctors, and all dentists should be tested? In Africa, people who are diagnosed with AIDS are isolated. Many of them must leave their homes and live in makeshift shelters, and are left to die slowly, painfully, and alone.¹⁸, ¹⁹

In 1847, Ignáz Semmelweis, MD, a professor of obstetrics and gynecology, was concerned about the very high mortality rate among women who gave birth in hospitals as opposed to those who gave birth at home. He wondered whether the higher mortality rate was related to physicians not washing their hands after completing an autopsy and then examining the women in labor on the ward. Dr. Semmelweis suggested that every person on his ward wash their hands in a chlorinated lime solution before each examination. In 1 month, the mortality rate on his ward dropped to less than 1% and continued to be high on the business-as-usual wards. He then started advocating “wash your hands” and became quite aggressive in his preaching. His medical license was taken from him and he died 7 years later in an insane asylum.²⁰, ²¹

A radiologist is asked to do an ultrasound on a woman entering her third trimester. The obstetrician is worried about the infant’s head. When the radiologist finishes the exam, the woman asks, “What did you find?” He replies that he will discuss the findings with her obstetrician. She then says, “Look, I want to know about the baby’s head and brain,” and at that point he sits down, holds her hand, and explains the significance of his findings.²²

An emergency department physician tries gallantly to save the life of a young woman. Her family waits, anxiously. One family member is an adolescent son who has a cognitive disability. After several hours, the woman dies and the physician consoles the husband. As he walks out, he notices the son standing by the edge of the curtain. The son grabs his arm and says “Thank you,” and the physician continues to walk—as he weeps.

What are your attitudes and values? There is no right and there is no wrong. Think about your oath you took to do no harm, and put your patients’ interests first. I went into medicine after having read Arthur Hertzler’s The Horse and Buggy Doctor, which depicted the 19th and early 20th centuries, when physicians made house calls. Let us look at the last 60 to 70 years. Between 1935 and 1945, great atrocities were committed in Germany, including the mass murders of children with disabilities, and medical experimentation on infants before they were exterminated. One of the most heinous policies of the Third Reich, and one rarely discussed, was that of child euthanasia. Unlike most of the other programs, this atrocity involved almost all of the German medical and public health system. “I know, of course, it’s simply luck that I survived so many friends. But last night in a dream, I heard those friends say to me, ‘survival of the fittest,’ and I hated myself” (Bertolt Brecht).²², ²³

It was September 1939 and Hitler had just completed his Polish campaign. He signed an order directing his personal physician, Karl Brandt, MD, to design a process for selecting children with severe disabilities and sicknesses for “mercy killing.” Hitler had received a letter from a party member identified as Knauer, asking that his handicapped child be killed. Hitler sent Dr. Brandt to investigate the child’s circumstances and he confirmed, “that child had been born blind, an idiot—at least, it seemed to be an idiot—and it lacked one leg and part of one arm.” Hitler directed Brandt to contact the family’s physician and to authorize euthanasia—the child was subsequently killed.²³ The roots of this program date back to the 15th century, when the Inquisition systematically purged Jews from political and social life. David Hume, in the 18th century, wrote that blacks were less intelligent than whites and Jean-Jacques Rousseau asserted that women were inferior to men in the sphere of reason.

Francis Galton’s “eugenics movement” was concerned that physically and mentally impaired individuals would pollute society. A committee organized by Hitler argued that the euthanasia program would not only eliminate genetic disease but would also “free up” hospital beds and personnel that would be needed in the coming war. The new group changed the name of the euthanasia program to the Reich Committee for the Scientific Registration of Severe Hereditary Ailments. Midwives and doctors who had delivered and were treating babies 3 years old or younger and who were born with congenital deformities such as mongoloidism, blindness, cerebral palsy, spina bifida, crippling deformities, or any malformation of any kind, were required to notify their public health offices.

The local public health officer then verified the information and reported to the Reich Committee. New forms issued on June 7, 1940, asked for the child’s address and other details about the birth, as well as its family’s religion and history, especially any history of hereditary disease, alcohol, or drug addiction among family members. These forms were reviewed by a committee whose members never saw the children, but who were charged with marking each case file with a plus or minus. Children whose files had a minus sign were rounded up and their parents were told that their child would be sent to a special hospital for special care. Those who objected were told that they would be declared unfit parents because the children needed the special treatment. The SS personnel who took the children frequently wore white uniforms and white coats so as to appear to be doctors and orderlies. The children were taken to 22 state institutions to be euthanized. In some institutions, the infants and toddlers became subjects of medical experiments. Parents were notified that their children had died of complications. In July 1941, the program was expanded; all doctors, nurses, and other medical personnel were told they must register not just infants, but all minors known to have crippling handicaps. Schoolteachers who noticed such handicaps in their students were required to register those children with public health authorities. Failure to do so meant a fine, imprisonment, and/or job termination. The euthanasia program was expanded to include teenagers with handicaps—except for Jewish children, who were originally excluded on the grounds that they did not deserve the “merciful act.” In May 1943, however, the policy was changed and Jewish children with disabilities began to be killed, a practice that was continued until the war ended.²⁴, ²⁵, ²⁶

As you recoil in righteous indignation, I will remind you that in the United States, from the 1940s through the late 1960s, it was common to sterilize women with developmental disabilities. Between 50,000 and 100,000 children and young women were sterilized. Many children were institutionalized on the recommendation of their physicians, and in many cases families were discouraged from visiting their “deformed” children. We have no idea how many hundreds of thousands of children with disabilities have been locked away forever.

Leon Greenspan, MD, a pioneer in pediatric rehabilitation, once told me that he went to a recital in Carnegie Hall given by a young woman with spina bifida. Her parents had been told to not bother with the child because she was severely deformed. The parents kept their daughter and watched her grow into a successful adulthood. As I was doing the research in preparation for this lecture, I remembered that my grandmother told me that the physician who delivered me told her that my parents were young and healthy and that their baby would be better off dead. I wonder whether, had I been born in Germany, he would have taken action on that prognosis to spare me “pain and suffering.” I guess I would have never had to do this talk!

We have made great advances in medical science, thus we are able to predict problems or make diagnoses before or shortly after a child is born. There are people who believe that disability and suffering can be prevented through abortion—or even through infanticide. Dr. John Harris argues that pregnant women should have diagnostic amniocentesis and, if an abnormality is found, society has a responsibility to abort the fetus. Dr. Harris believes that living life with a disability involves suffering on a significant scale. Prevention of suffering, after all, is morally desirable. It is interesting that Dr. Harris believes that the single exception to this rule is when a woman can only give birth to a child with a disability.²⁶ He feels that in such a case, it is desirable for her to have children. So giving birth to a disabled child who will suffer is preferable to having no children at all!

Peter Singer, PhD, believes that infants with physical or mental disabilities do not have a right to life. He argues that parents and doctors should put them to death so they do not suffer, or burden society, thereby leaving room for children who are “normal.” Singer suggests that parents have a duty to let die, or to kill, disabled, deformed, or retarded children so to improve society.²⁷

Parents and physicians can justify infanticide on the basis of total utility: “When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed.” In 1972, Michael Tooley, PhD, wrote that only beings who are able to value their own existence have a serious right to life.²⁸ According to Kuhse et al, infants with intellectual disabilities do not share an equal moral status with infants without intellectual disabilities, and therefore killing them would be more justifiable because they do not have the ability to lead “normal lives.”²⁹

Let us discuss the issue of the treatment of a girl named Ashley.³⁰, ³¹ Was it unethical or was it compassionate? In January 2007, Ashley’s parents explained in a blog the rationale behind their decision to keep her small and childlike. Ashley, who is now 9 years old and has an estimated mental age of 3 months, underwent high-dose estrogen treatment, a hysterectomy, and breast bud removal to stunt her growth and physical development. This was done when she began showing signs of puberty at age 6. Her parents thought that this would keep her small and easier to manage so that they could give her a better quality of life. This treatment was done at Seattle Children’s Hospital with the permission of that institution’s ethics committee. The real tragedy in this story may be that our society does not support families, and places an undue burden on them if they keep their children at home—especially if they cannot afford care providers. You decide: Did these parents and doctors act courageously and compassionately—giving this girl the best life possible? Or did they violate her human rights and dignity in a misguided attempt to make the best of a bad situation?

I came across an editorial in the Archives of Pediatrics and Adolescent Medicine³² on the “Ashley case” that was written by one of my former patients who directed a developmental disability program. Ethan Ellis wrote: “As a person with cerebral palsy, who was not supposed to be able to walk or talk or think, but who led a professional life for 25 years and married a woman whose body was severely scarred by failed experimental surgeries that were supposed to ameliorate her cerebral palsy, it would be easier to dismiss their actions with anger. This was my first reaction and the universal reaction of my colleagues in the disability movement.”³² He goes on to say: “The notion of taking a 6-year-old disabled child and stunting her growth for the convenience of her caretakers called to mind a number of other crimes committed by good people against defenseless people with disabilities in the name of bad ideas: shiver pools, institutionalization, eugenics, forced sterilization and experimentation with radiation and other deadly agents and, of course, euthanasia.” He also pointed out that the physicians involved did not know the risks of the treatments they had performed.³²

Nearly 28 years ago, the Reagan Administration drafted the Baby Doe Act, which mandated treatment for impaired newborns unless (1) they were permanently comatose; (2) any treatment would merely prolong their death; or (3) treatment would not be effective. These rules were inspired by the fact that in the late 1970s and early 1980s, physicians and parents were making decisions about whether to let these infants die. The Baby Doe Act was declared unconstitutional by the U.S. Supreme Court, which upheld the idea that informed parents are the best judges of what is good for their children. The legal tradition in the United States accords parents presumptive authority to make decisions for their children on the assumption that parents will always act in accord with the child’s best interest.³³, ³⁴, ³⁵, ³⁶

What ever happened to the privacy of the relationship between the physician and informed parents to decide whether the mother should give birth or not give birth? Consider the following circumstances: (1) Tay-Sachs Gaucher disease, infantile spinal muscular atrophy; (2) trisomy 21; or (3) children whose ultrasounds show atresias or a limb deficiency. In poor or unstable homes, children born with these conditions may not have access to necessary treatment or rehabilitation and may end up in an institution. With adequate social and economic resources from our society, and with education given to the child and the family, these children can become active and productive members of our society. We have a duty to educate and inform our patients’ parents. Some parents are not physically, emotionally, or economically able to take care of a child with, for example, Down syndrome or congenital limb deficiencies.

Sometimes we do not agree with parents’ values or their culture. As physicians, we need to support their position or find someone who can help them. We must explain the risks of surgery to correct the problem in utero and what problems might occur at or after birth.

Another question: Is it wrong to deliberately conceive or give birth to a child with a disability? There are no correct answers. Every family is different. If parents want to have children and rear them despite their disability, it is absurd for us to impose on them the obligation to abort the fetus.³⁷

What should we do in cases such as the following?

In case 1, a child was identified in utero as having a congenital abnormality of the liver and the small intestine; the diagnosis was that the child would need a liver transplant to survive. The parents still wanted the baby. In case 2, a child was born with severe respiratory arrest. In both cases, we explained to the parents what they would experience when the children were born and what economic and social problems they as parents would have. The parents wanted everything that was possible done for their children. In both cases, there were siblings to consider. Both mothers were from poor socioeconomic groups, and live 100 miles from the medical centers. Both children spent the first months of their lives in a neonatal intensive care unit and were then transferred to a pediatric intensive care unit. In case 1, the mother eventually gave up her child, having divorced and feeling guilty about abandoning her second child. She has spent months in the hospital and has had difficulty buying food and finding lodging. The second mother also divorced. Both children eventually succumbed to their illness. What lessons did we learn? What could we have done differently?³⁸, ³⁹

Society has to decide what resources it will provide parents and families in such situations. Both of these children lived for more than a year. They were very weak, and one, with severe retardation in speech patterns, actually learned to summon a nurse by mimicking the emergency alarm on the machines monitoring the child.³⁸, ³⁹

My last comment is about the Perruche judgment—the “right not to be born.” In 1982, a pregnant Josette Perruche discovered red spots on her 4-year-old daughter’s body. The child was diagnosed with German measles. Mrs. Perruche told her doctor that if she was infected, she wanted an abortion rather than risk giving birth to a severely handicapped child. She underwent blood tests and her doctor assured her that it was safe to continue her pregnancy. A later blood test showed that the laboratory had made a mistake. In 1983, Nicholas Perruche was born deaf, partly blind, and with severe brain damage. Within 2 years, Mrs. Perruche had a “nervous breakdown” requiring psychiatric care. Today, the boy is cared for in a government institution and spends alternate weekends with his divorced parents. The parents received a settlement for what was considered negligence. In 2000, France’s highest appeals court awarded compensation to 17-year-old Nicholas Perruche. The courts agreed that he had a right to seek damages for wrongful birth. Prior to that case, only parents could seek such damages. In November 2006, a French court awarded damages to a boy for being born with Down syndrome.⁴⁰, ⁴¹

On January 1, 2007, French gynecologists went on strike, refusing to carry out prenatal screenings. There was a tremendous public outcry and the French government passed legislation overruling both decisions. Under the new law, only parents may seek damages and only on the grounds of blatant medical error. The genie is out of the bottle, despite French legislation. What do you think? Do adults have the right to sue for pain and suffering because they were born? How do we measure the quality of life of a child with a disability?

Voluntary euthanasia and assisted suicide have been legal in the Netherlands for almost 20 years. In 1995, 2 physicians who reported terminating the lives of severely ill and disabled infants were prosecuted. The Dutch courts decided that the physicians had done the right thing in spite of the fact that written permission from the parents was not found in their records, as required by law. Even though death was not imminent, these infants were believed to have a shortened life expectancy, and so the courts felt that it was acceptable to terminate their lives to end their suffering. There was expert testimony disagreeing with the physicians’ decision.⁴⁰, ⁴¹, ⁴²

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Recommendations 

Our specialty and our survival depends on our involvement in the needs of people with disabilities. I urge you to be active supporters of their needs. Passivity means failure for our specialty.

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