Mid-morning on Sept. 11, 2001, when it seemed all America was glued to TVs or to streaming video of the terrorist assault on the Twin Towers, my eyes were fixed elsewhere. Alone in Pastor Robert Walker’s borrowed study, I was composing my grandmother’s eulogy.
I had been with her when she died the afternoon of Sept. 9, my hand holding her hand, my head bent low, level with her pillow and face.
A week or so earlier, I had been surprised by one of those rare moments of grace, those few minutes when you catch of glimpse of who your loved one was before senile dementia robbed her of herself: I heard Grandmother laugh with a warm, hearty laugh I had heard echo across her kitchen table so many times before.
It had been a serious moment. I suppose one of my aunts wanted to let Grandmother know it was all right not to fight on, that she could “go gentle into that good night.”
“Mother,” she queried, “have you seen any angels?”
“No, but I have seen some elephants.”
As we erupted in laughter, Grandmother joined in the laughter as well—an ephemeral grace. There were no elephants in the room; we could laugh at the absurdity of the thought.
Yet as my Grandmother’s time to die drew close, to the south a young woman seemed trapped between life and death, frozen in a persistent vegetative state for more than a decade.
We all know her name, but who among us really knew Terri Schiavo? Her wishes seemed a mystery even those who loved her most could not unravel cleanly.
Her husband, Michael, was convinced she would not have wanted “to be a burden.” They had twice had serious conversations about end-of-life matters. “I made a promise to Terri,” he said.
Terri’s parents had doubts these conversations ever occurred and seemed intent to hang onto Terri whatever she may or may not have wanted.
Such family disagreements about appropriate medical interventions at the border of life and death are all too common. These conflicts are generally resolved through repeated conversations among professional and family caregivers. Resolution mostly comes without assistance of a hospital ethics committee or, less often, by recourse to the courts.
Never has a seemingly interminable end-of-life courtroom drama so captivated the American public or so motivated elected officials as the Terri Schiavo case has.
My Grandmother spoke a future truth in riddle without being aware of it, just as the Delphic oracle had. Sometimes, there really are elephants crowding to get into the room of the dying: Gov. Jeb Bush, President George W. Bush, Sen. Bill Frist, together with many smaller pachyderms.
Decisions about withholding or withdrawing medical interventions at the end of natural life are among the most difficult and personal choices we are called upon to make. That is particularly so when our loved one has not left explicit wishes designating wanted or unwanted medical interventions.
Because 85 percent or more patients lack an advance-care plan (a “living will” or appointment of a healthcare agent), these dilemmas are all too common. If funneled to the courts for resolution, such cases could easily overwhelm an already burdened system.
My personal and professional experience is that families generally take the responsibility to decide for another seriously and struggle to do the right thing for their loved one. My firm belief is that those who have known the patient best and are best acquainted with the patient’s general values are the most natural surrogates when a patient has not left a clear advance directive.
I further believe that when application of the patient’s values are unclear, those most familiar with the patient’s day-to-day, lived experience, both before and after the loss of decisional capacity, are best able to determine what is in that individual patient’s best interests. (The 2004 Tennessee Health Care Decisions Act is model legislation that includes just such criteria for identifying the most appropriate surrogate decision-maker.)
Otherwise well-qualified surrogate decision-makers should not be dismissed out of hand, solely because they refuse to authorize initiation or continuation of artificially provided feeding and hydration in those cases in which medical judgment concurs that these interventions will only prolong dying without hope for meaningful recovery.
And yet in many states, legislators are now introducing “Terri Schiavo” bills to so limit choice in end-of-life decision making by giving preference to whichever relative by blood or marriage who would agree to continue medically provided feeding and hydration.
Artificially provided feeding and hydration are medical interventions, much like other advanced life-sustaining technologies (ventilators, dialysis, or CPR). As such, their use must be justified by appeal to the likely benefit the patient will derive from them weighed against any harm the technology might impose.
Artificially provided feeding and hydration do not always benefit patients. Sometimes these interventions cause harmful side effects, such as bloating, diarrhea, vomiting and aspiration pneumonia. These interventions, or complications arising from their use, sometimes hasten patients’ deaths.
Loss of appetite is not uncommon among the dying, who, if able, may object strenuously to efforts to force feed them by mouth. Respecting their refusal is not starving them. Rather it is recognizing that for them food has lost its benefit and adds to their burden.
Just as no patient should be compelled to receive a non-beneficial intervention–whether unnecessary surgery or some other but should be free to refuse–likewise, qualified surrogates should be free to refuse medically provided feeding and hydration on behalf of decisionally incapacitated patients when they believe in good faith that such is in accordance with their loved one’s values or best interest.
Christopher Church is professor of philosophy and religion at the Baptist College of Health Sciences, where he has taught biomedical ethics and values to nursing and allied health students since 1995. As chair of the ethics committee at St. Jude Children’s Research Hospital since 2000, he has led an inter-disciplinary team assisting parents in making end-of-life decisions for their children. As chairman of the board of the Mid-SouthCenter for Biomedical Ethics, he leads a regional coalition of hospital ethics committee members. Perhaps most importantly, as a family member he has shared in making end-of-life decisions for loved ones—for a father who died of cancer 20 years ago and for two grandmothers in more recent years.