End of Life Reflections - Michael Grady, M.D.

March 31, 2005

This morning Terri Schiavo, a 41 year old brain damaged woman died in a Florida hospice ending what has been a tragic story on many levels. Since presenting very briefly some of the issues in this case at The Death and Dying conference at St. Paul’s some six weeks ago, the spotlight has come to focus intensely on Mrs. Schiavo’s case and the equally tragic division in her family. As a family physician for some 29 years, a geriatrician and student of medical ethics for the last 16 years and as a practicing Catholic who has studied Catholic thought on end of life issues, I offer these reflections.

From a medical ethics standpoint I believe this case is as straightforward as ethical cases get. It is well established since the Karen Ann Quinlan case some 30 years ago that adult patients, even those unable at the time to express or confirm their wishes, have the right to refuse any and all medical care. If it can be reasonably known what the patient would have wanted in any situation those wishes must be followed. In this case the patient’s legally recognized ranking surrogate decision maker (her husband) had to the satisfaction of several court reviews made the case that his wife would not want continued life support in something like her current condition. The legitimacy of his claim and his suitability to be her surrogate were extensively litigated and upheld. A guardian appointed by the court to represent Mrs. Schiavo’s best interests concurred with the decision to remove her feeding tube. End of case from a medical ethics perspective.

The problem is that a family/medical/ ethical/judicial matter has become a Right to Life issue with the polarity and zealotry that characterize these discussions in American society. I believe that characterizing this case in those terms is wrong and those claiming an unequivocal Catholic position that would demand life support in situations like this are mistaken. Asserting that Terri Schiavo has a right to a feeding tube leads to the logical inference that there exists a moral obligation to accept such care and a duty to provide it in all cases. If patients in persistent vegetative state are truly alive and deserve this protection, then analogous to the argument used in asserting a right to life for a fetus, there is no “choice”. The right is inviolable. I think this is untenable and offer the following questions as ways to frame thinking about this case.

Are patients in a persistent vegetative state alive?

Patients with PVS are severely brain damaged, most commonly the result of prolonged lack of oxygen to the brain, as was the case with Mrs. Schiavo. Though many “vegetative” activities – respiration, temperature control, digestion, sleep/wake cycles persist, higher brain “cortical” function is irreversibly lost. These persons show no evidence of awareness of self or environment, behavioral responses to stimuli, language comprehension or expression. They are incontinent of bladder and bowels, require total care, cannot swallow and thus need artificially supplied nutrition and hydration. They frequently get pneumonia, urinary tract infections and skin ulcers even with excellent care. They don’t get better and therapy to improve their function is not helpful. Many neurologists have examined Terri Schiavo over the years and found her to meet the criteria for PVS. The CT scans shown in the media revealed a startling degree of brain loss and the diagnosis really was never in doubt.

It is clear from polls that the vast majority of people would not choose this level of existence for themselves or a loved one. In my own professional career I have helped patients complete or otherwise reviewed hundreds of advance directives. Never have I had a patient indicate that they would want a feeding tube in this setting of severe brain damage. Even if one concedes that her wishes were never known, what are the chances that a vibrant 25-year-old woman having suffered this devastating injury would have chosen to have a feeding tube for the next 15 years?

I have heard Fr. John Touhey, an ethicist with the Providence Health System speak of life as “possibility.” As Catholics we have embraced this in our formulations around the traditional life issues. We recognize the tremendous possibility in the fetus so oppose abortion. We understand the possibility for growth in patients facing death and oppose assisted suicide. There is intrinsic dignity and the possibility for personal and spiritual growth in even those who have committed heinous crimes, so we stand against capital punishment. We support the right of all persons to adequate food, housing and medical care because these things make the rest of life possible. But the absence of cortical functioning: the awareness and self-awareness, reasoning and interaction that distinguish human life are absent in PVS. It seems in these cases that life is no longer possible.

Is the provision of food and water so basic that it must be supplied in all cases?

I would make a distinction between “food and water” and artificial nutrition and hydration. If you can consume it yourself, mom gives it to you, you can buy it in a store or find it on a menu then it is food and water. If the material is a balanced chemical mixture of elemental compounds and nutrients that must be ordered by a physician from a pharmacy and can only be administered by a licensed medical professional through a surgically implanted tube in the abdominal wall then it can rightly be said to be a medical intervention. As such it is no different than other medical interventions like a ventilator, IV fluids or antibiotics.

Do patients with PVS suffer if a feeding tube is withheld or withdrawn?

Of course no one can know for sure. Suffering is a subjective experience. However, the medical literature and the experience of hospice workers suggest that patients don’t suffer. There is no evidence that patients in these circumstances experience hunger or thirst or that this withholding is painful. In fact, the gradual shutdown of organ systems induces a lack of appetite and dying in this manner is among the more peaceful ways.

What is Catholic teaching in this area?

It is not clear anymore. Traditionally, Catholics have not been obligated to accept medical treatments that they consider burdensome or “extraordinary”. Since 1992, U.S. Catholic Bishops have encouraged the continued “feeding “of PVS patients, but have deferred to families and physicians the final decision in these cases. In March 2004 the Pope declared that “ the administration of food and water, even when supplied by artificial means, always represents a natural means of preserving life, not a medical act and is, as such, morally obligatory”. His remarks were based, in part at least, on the assumption that there is diagnostic and prognostic uncertainty in PVS. However, when the criteria for PVS are met there is no recovery and the prognosis is not in doubt. Since then, as near as I can tell, there has not been any significant change in the care these patients get in Catholic hospitals. It is still left to families and their physicians to make these decisions and advance directives are being honored. These decisions are made every day in hospitals, clinics, nursing homes and hospices. At least once a month I sign an order foregoing feeding tube placement in a patient should they become like Terri Schiavo. I do this humbly, recognizing patient autonomy and the primacy of family in these decisions. I believe like many other Catholics that part of respecting life is recognizing when it has ended, when it has stopped being possible.

Michael Grady, M.D.