What are we doing for people who need us the most?

By Patricia K. Thompson

I have watched the unfolding case of Terri Schiavo for months. This woman, in a persistent vegetative state for fifteen years after a collapse which left her brain without oxygen for several minutes, is at the center of a bitter dispute between her parents and her husband.

This morning’s paper stated that her parents have now petitioned that the husband divorce her, so that they may assume guardianship and keep the feeding tube in place which has kept her alive all these years. It is yet another episode in the string of rancorous exchanges between these two parties, and illustrates the necessity for a greater understanding of end-of-life care, and medical interventions in general.

As a former Certified Hospice nurse I saw many such cases, though none of such notoriety. I sat at the bedside of many patients whose families had had the terrible realization that their loved one would never again have a future as a fully-functioning human being.

Now that I have also taught Health Care Ethics I have seen growth in understanding in students who began with an abstract idea of what such extended treatment is and ended with a realistic picture of what being on artificial nutrition and hydration actually entails.

Feeding tubes were not originally designed to be a long-term answer. They were meant to provide a temporary ability to give artificial nutrition and hydration to patients who for whatever reason could not eat, but for whom the resumption of normal dietary intake was a real possibility.

In our parents’ generation, an incident such as Terri Schiavo had would have ended a life because of her inability to swallow. In that case, as with many in that time, caregivers would keep a patient’s mouth moist and provide comfort care until the onset of the inevitable.

With the advent of artificial nutrition and hydration, however, came the option to continue over a long period of time. What had originally been “extraordinary” in the medical world had become “ordinary,” and thus the onset of the confusion which exists today.

Unfortunately, the use of those terms has caused untold grief in the world of medical ethics. Now, the use of “reasonable” and “unreasonable” treatment is more appropriate, and falls in the line of long-standing teachings of the Church. Going back as far as the address of Pope Pius XII to a group of midwives, we see that disproportionate use of medical treatment was not morally obligatory. Rather, looking out for the best interests of the patients and their families was the predominant concern.

Modern science and ethical principles sometimes part ways. By this I mean that what we “can” do we are not always “obliged” to do.

The worst example of the effects of this thinking was, to me, two women in one room of a nursing facility in which I worked briefly. Each women had been on a feeding tube for twenty years. Both were from Catholic families, who had been instructed that it was necessary to keep their loved ones on tubes for their entire lives. Caring for these women was an eye-opener, and seeing the effect on their families was even more so.

One question we might ask is this: “What does it say about our faith when we insist on keeping our loved ones alive in a persistent vegetative state, for years on artificial nutrition and hydration? Do we not believe that God waits to embrace them upon their return to their true home?” The vision of an entire facility filled with unconscious patients on feeding tubes comes to mind, and it asks us “for whom do we do this?”

Watching Terri Schiavo’s father say that he didn’t want his daughter to be “killed in cold blood” was a chilling thing for me. For we have failed this family by not supporting them in the loss of their daughter. At this point only the vindictiveness and the judgments upon their son-in-law who now lives with a women with whom he has had two children in the past several years is apparent in the media.

But to those of us who have worked in Hospice and Palliative Care, and who have thought about and prayed over the results of our medical technology’s power over human life, this is immeasurably sad.

Had Terri Schiavo been kept comfortable and ministered to once the persistent vegetative state was diagnosed, she, in the light of our faith, would now be with God, at peace, and joined to her Creator in eternity.

The legal system, as well as the mixed bag of reasonable/unreasonable which the medical technology allows, has failed this woman and her family as well.

We can only pray that some sort of counseling be given to these people, and that they release their daughter into God’s hands, freeing her from whatever motivations are keeping her alive in such a state.

And, finally, perhaps we may learn something about our “need” to pull out all the medical stops, and internalize for ourselves what our true human essence is—not the ultimate end of everything, but rather a stepping-stone to our God and fullness of life.