A few months ago in this space we raised the issue of “Care for Patients in ‘PVS’,” or “persistent vegetative state.” With the continuing storm of controversy surrounding the case of Terri Schiavo, it seems worthwhile to return to the question.
Terri has been diagnosed by her physicians as being in a persistent vegetative state, a diagnosis vehemently disputed by her parents and by other medical specialists. Her estranged husband and legal guardian, Michael Schiavo, has repeatedly sought a court order to have her feeding tube removed. Public outrage led Florida Governor Jeb Bush to intervene at Michael’s first successful attempt, leading to a reversal of the order and passage of “Terri’s Law.” Pressures continue, however, to deprive her of food and hydration, and thus to “allow” her to die. Upon her death, her husband (who since Terri’s collapse in 1990 has fathered two children by another woman) stands to collect a large sum of money. Only the valiant efforts of Terri’s parents, joined by a great many pro-life advocates from around the country, have kept her from dying by starvation and dehydration.
The issue is a critical one, and its implications could have a direct impact upon the life—and death—of any one of us. The whole question in Terri’s case turns on the diagnosis and definition of “PVS.” In the earlier article, we relied on the definition of the condition provided in the well-known Merk Manual of Diagnosis and Therapy, together with other medical dictionaries. These sources define PVS as a chronic state that results from severe and irreversible damage to the brain hemispheres, such that only the brain stem is adequately functioning. Although regular sleep-wake cycles persist, and the patient can at times utter sounds that appear to be attempts to speak, there is in fact no cognition, no perception of stimuli, and, after a period of two or three months, no chance for recovery. The person is in fact “brain dead,” even if a distinction can be drawn between their actual state and a state of “deep coma.”
Every indication is that Terri Schiavo in fact is not in a “persistent vegetative state,” as that expression is normally defined. She has periods of consciousness and has clearly responded to the presence and words of her family. From photos and films of her behavior that have circulated in the media, it is apparent that her smiles and eye contact are more than mere reflex actions; they are sound evidence that she is to some degree aware of her surroundings and is capable of interacting with other persons and with aspects of her environment.
Nevertheless, the fact that she is often “nonresponsive” has led some medical professionals to support her husband’s demands that she be dehydrated, that is, left to die. As Wesley Smith has pointed out, “Patients diagnosed as being permanently unconscious—PVS—can almost never be saved from dehydration once the primary caregiver decides to stop tube-supplied sustenance, even if close family members object.” [Human Life Review, Fall 2003, p. 76.] Terri is not even in a state of PVS. Yet if her husband prevails, she will be subjected to the agony of a death by starvation and dehydration.
Care for seriously disabled patients should be determined by the actual circumstances of the case, rather than by the wishes of those who would benefit from the patient’s demise. This should be evident to any disinterested observer. It is necessary, though, to make a crucial distinction between (1) cases of terminal illness, where the patient is engaged in a dying process and “the soul is struggling to leave the body”; and (2) cases of PVS or other conditions—such as Terri Schiavo’s—where the patient is not “terminally” ill but can be maintained on life-support.
In the first case, it may well be appropriate to withhold all life-support, including a nasal-gastric tube, for reasons we have noted before: to allow natural analgesics to build up in the body and ease the patient through the dying process. The diagnosis of “terminal” illness, or a “terminal” condition, however, should not be understood as it so often is: that the patient has “less than six months to live.” No one can predict with certainty the condition of a patient over that span of time. “Terminal” should refer to a patient who is clearly—and irreversibly—dying, a state that can be diagnosed with a high degree of accuracy by medical specialists.
In Terri’s case, however, as in the case of so many patients who have been diagnosed as being in “PVS,” the expression “terminal” does not apply. They are not dying, at least not imminently. As inconvenient or expensive or burdensome as their care may be, they are living persons who deserve every legal and moral protection we can offer. They deserve to live, rather than to be put out of the way.
When death approaches—our own death, or that of someone in our care—then it is essential for us to ensure that the medical team will respect a basic rule of thumb: when in doubt, opt for life, whatever the expense, however great the burden. This is our moral responsibility before God and before one another.
An important means of preparing for that time is for each of us to name a proxy—a priest, friend or relative—who will accept “durable power of attorney,” in order to see to it that our desires regarding treatment will be respected, if we are no longer competent. This is more effective than “living wills,” which are often misinterpreted, or simply ignored, at the critical moment.
Within our parish communities, as well as among family and friends, we should be able to find a trusted person who can defend our interests before the medical team and, if need be, before the courts. Most importantly, through their accompaniment and their prayer, that person would assume on our behalf the basic “priestly” role of offering our life and our condition to God, so that our passing from this world to the next might be truly “painless, blameless and peaceful.” We should not have to depend, like Terri Schiavo, on public outcry to prevent a gross violation of civil rights and an affront to human dignity. As members of the Body of Christ, we owe to one another the degree of care and love that will guarantee that each of us faces death, not with the fear of abandonment to a cruel and untimely end, but with serenity and with unshakable hope in the ultimate Physician of our body and soul.