Arguments for discontinuing life sustaining treatment for severely disabled persons sometimes rest upon a determination that such life is not worth living. Infanticide, abortion, and euthanasia might be supported for the same reason–on the belief that a severely disabled life is a priori, a miserable and presumably a less-than-human life, and, therefore, disposable.
A consistent ethic of life analogically correlates the various stages and qualities of human life from its generation to its decline. Yet there are, in fact, important dissimilarities between viable life and early fetal life, or between a "typical" human being and a "defective" human being. Therein lies a problem which compounds the public dispute as to who are to be considered persons. Years ago, Stanley Hauerwas observed that on both sides of the philosophical debate, which emerged out of a concern for the dehumanizing effects of some technology, an occasional scholar uncritically adopted similar criteria in an attempt to isolate what was "distinctively" human:
In their enthusiasm to assert the dignity of man as either enhanced or destroyed by technology, they formulate criteria of the human that appear in our cultural context as an ideology for the strong. Such criteria clearly embody our assumption that man's rational and cognitive ability is what makes us human. Yet this belief is the basis for the inhumane treatment and care our society provides for the retarded, as we assume such people are fundamentally other than and foreign to the human community (Linacre Quarterly, Nov. 1973, pp. 217-222).
This is a principle problem with attempts to find the sine qua non" human" factor. If the cognitive were to be considered the constitutive element, then what is the moral/personal status of profoundly retarded persons who have minimal cognitive abilities?
Etiology and Prognosis of Mental Retardation
There are numerous causes for mental retardation, yet in 80% of the cases, the etiology is unknown (The Merck Manual, 15th ed., 1987, p. 1982). The cause is more readily identified in the more severely retarded child. Mental retardation can be caused by numerous chromosomal, genetic, or congenital factors. Perinatal complications may increase the risk of mental retardation. Currently, there are recognized five primary clinical categories: borderline, mild, moderate, severe and profound. Despite the many documented limitations with IQ tests, the scores generally are adequate indicators of mental retardation.
Borderline retardation, also called "slow learner", with an IQ of 84 to 71, is rarely identified before a child reaches school years. Almost 14% of children tested in schools have IQs which identify them as borderline! Yet these persons can grow up to lead fairly normal lives, blending into the main population.
Mildly retarded persons, with IQs between 70 and 50 are also called "educable". A person in the upper levels may attain 4th to 6th grade reading levels. Moderately retarded children, with IQs between 49 and 35, are also called "trainable". These children have obvious language and motor delays. They require some supervision and support but can cope with basic self-help skills. Given adequate support and training, both mildly and moderately retarded adults can live with varying degrees of independence and employment in the community.
Severely retarded persons, with IQs between 34 and 20 are trainable, but to a lesser degree.Profoundly retarded persons (IQs below 20) usually cannot learn to walk and have minimal language skills. The quality of their care depends in good measure upon the local community's attitude and commitment to these persons.
A Person/Case Study
Mave Catherine is an eleven year old, multiple disabled child. After a slow start, Mave is now 4'5" in length, weights 67 pounds, and is growing rapidly. She is severely/profoundly mentally retarded (an approximate IQ between 19 and 22), noticeably microcephalic with significant atrophy of the cerebral cortex. She is essentially blind from advanced retinopathy of prematurity, previously knows as RLF, and experiences epilepsy and cerebral palsy (severe spastic quadriplegia and athetoid trunk). Although she can roll on a mat unassisted, Mave is non-ambulatory and will never develop the motor skills for sitting up unaided.
Mave was delivered by cesarean section about two and a half months premature to "a dying mother" suffering from severe preeclampsia. The mother survived. Mave, however, weighing 2 pounds, 13 ounces (in 1979) suffered from severe hyaline membrane disease (RDS). She was intubated, and developed bronchopulmonarydysplasia. Over the course of her five months in neonatal intensive care, she endured numerous penumothoraces, intracranial hemorrhages, and a severe lung hemorrhage. From the records, it is clearly extraordinary that she survived.
Although obviously severely/profoundly retarded by initial observation, an extended encounter with Mave reveals a remarkably complex person. She appears to understand far more than she can communicate. She is quite verbal: her vocabulary is restricted, as one might expect, but she has specific words for individual persons and activities which she likes. She calls her mother "mama", her father "papa", and her grandparents on both sides "amma" and "ampa". She says "baaa" for bath, "pop" for popcorn, "ub" for "I want up", and "mo" for "I want more". She has a general term for play: "buh-buh". Mave will sometimes construct simple sentences: for example, "Mama, mo buh-buh." All of these terms she uses appropriately both at home and school.
Like most children diagnosed as developmentally delayed, Mave started school when she was 3. She benefits greatly from physical therapy, proper positioning and occupational therapy. Fine motor control is developing. She will search out objects by touch and sound location and then pick them up on her own. She can eat a breadstick with minimal assistance. Mave has always been highly social at school, interacting with her teachers and therapists. Until recently , she was placed in public schools where she had the added benefit of interaction with her typical peers although her primary placement has always been in a self-contained classroom of similarly multiply-disabled.
Mave exhibits a significant memory of persons dear to her. She is visited by a grandmother only once every year or two, yet will immediately call out to her the minute she hears her voice in the room: "amma!" When her father calls on the telephone from work, her mother will put the phone to Mave's ear, and Mave will immediately smile and say "papa" several times. To all who meet her, Mave is obviously a happy child. She yells, squeals, and laughs throughout the day, whining only on occasions when she is tired, hungry, ill, or in need of extra attention.
Although she must be spoon fed by another, Mave eats the same food as her parents, mashed and chopped, but not pureed, and has a voracious appetite. She eats three meals per day and two snacks. She has excellent chewing and swallowing skills, even lateralizing her tongue to chew pills.
Mave enjoys the company of her typical peers, especially when they include her in some boisterous activity. She has a highly developed relationship with her parents and a personal caretaker.
Mave will always need total care. Yet she is actively involved in her world. She has emotional needs similar to any other typical child. Mave has always been cared for in the home and because of good care, has a normal life expectancy.
Toward Defining Personhood
Mave's "personhood" cannot be reduced to the sum of her parts. Human personhood is not diminished by a significant reduction in cognitive/rational activities. Mave is not a soul trapped in a body. She is a unified being. The Vatican 1980 Instruction on Respect for Human Life emphasizes that the human person is constituted as a "body/spirit integral whole". This integral union is presumed from the moment of conception. Personhood is not something which society bestows on its members. Rather, "to be a human being, an organism of the species Homo sapinetssapients, is to be a human person" (Ethics & Medics, Sept. 1987).
Determining what is ethically disproportionate life-sustaining treatment must never be made on the basis that a dÖling condition makes a life not worth living–although disabling or defective conditions will certainly play a part in weighing the burdens and benefits of the treatment considered. But the same ethical criteria must be used for all persons, whether "typical" or disabled. In our health care decision-making, we should not lose sight of our ultimate destiny as human persons: our union with God in which our integral body/soul unity will be fully ransomed, healed, and restored: in Christ–the paradigm for our humanity".
Dan O'Brien, M.A.
Assistant Director of Research and Education
Pope John Center