Saying no to life: reflections on death and justice.

• Author: Avila, Daniel

Sometimes a "big question" emerges from the daily humdrum as we cope with the million little questions of life before us. The tasks of home and the workplace predominate until an overarching question appears with its unexpected challenge. Life's important questions can never be answered in a minute-manager second---they claim one's attention for many snippets of time over the long course of time. Once apparent, the big questions linger behind us, waiting for our attention, like stray dogs looking for human understanding.

At times our worldly duties no longer divert us from our philosophical musings but instead force us to confront questions of otherworldly import as our commitment to the ordinary encounters an extraordinary challenge. Suddenly, we cannot avoid the challenging question with all its philosophical implications because the here and now poses it, and its resolution keys our return to the routine.(1)

Often it is dying--perhaps the threat or imminence of death, if not death itself--that transforms just another day or week or year into the time when our lives are irrevocably changed. Death and the antecedent of dying always meet us at the wrong time or happen to the wrong person, or so it seems. Thus we struggle with the many questions unleashed by the very thought of death, when the stray dogs no longer wait for our attention but threaten to devour it.

As an attorney with the National Legal Center for the Medically Dependent and Disabled, Inc.,(2) I served as a legal guardian for a woman incapacitated by unconsciousness in a "right to die" case heard in the Indiana courts. This experience forced me to personally contemplate dying and death in the ongoing context of a controversial court case and unleashed two big questions that have hounded me ever since: what is justice, and how should justice work when someone "says no to life" by requesting death in the medical context for one's self or another?

These two questions are addressed in this article, which uses the case of In re Lawrance(3) as a reference point. The reflections herein are not exhaustive but serve as starting points for an inquiry into the nature of justice, as applied to life and death decisionmaking.

The Lawrance Case

Sue Ann Lawrance received nursing care and was fed through a gastrostomy tube at the Manor House at Riverview nursing home in Noblesville, Indiana, a suburb of Indianapolis. She was forty-two years old and incapacitated by persistent unconsciousness. Dr. William and Mrs. Bonita Lawrance petitioned a state court for the authority to withdraw sustenance from their daughter, and Judge Jerry M. Barr, sitting in Noblesville, granted the couple's request.(4) The Lawrances immediately moved their daughter to a hospice unit at St. Vincent Hospital in Indianapolis, where her feeding was withdrawn.(5)

Two weeks later, the first press account of the case prompted the Indianapohs-based Christian Fellowship with the Disabled through its attorney, Patti S. Mullins, to petition the Marion County Probate Court in Indianapolis(6) The Fellowship sought an emergency order to appoint a guardian with the authority to restore Lawrance's nutrition and hydration. Judge Charles J. Deiter granted the Fellowship's petition by appointing Mullins.(7) Judge Deiter limited Mullins's guardianship authority, however, by directing her in essence only to act as the incapacitated woman's attorney for the purpose of considering an appeal. The Lawrances retained their authority to make day-to-day decisions regarding their daughter's care.

Mullins negotiated an agreement with the Lawrance family to recommence Sue Ann's life support for three weeks so that an appeal could be made.(8) In addition, Mullins requested assistance from the National Legal Center because it had appellate experience in this type of case.(9)

Then the unexpected happened. Mullins resigned as guardian and recommended that I be appointed to take her place.(10) After another hearing, Judge Deiter accepted Mullins's recommendation.(11) I became Lawrance's limited guardian and retained the National Legal Center as my counsel.(12)

We appealed to the Indiana Court of Appeals on behalf of Lawrance's due process right to live and right to retain independent counsel, and the case was directly transferred to the Indiana Supreme Court.(13) Just before oral argument, Lawrance died, not from dehydration or malnutrition but from pneumonia, since her feeding was maintained throughout the appeal.(14)

The Indiana Supreme Court ruled that state law permitted families to direct the withholding of life-sustaining care from family members without going to court? The supreme court also advised "strangers" against challenging nontreatment decisions unanimously reached by the families and health care providers of incapacitated persons.(16)

However, the decision also held that when families petition the courts to resolve disputes over a medical treatment decision for an incapacitated patient, then the judge must appoint an independent counsel for the patient.(17) The supreme court also acknowledged that a judicial "right to die" proceeding would be state action subject to constitutional due process constraints,(18) thereby agreeing with the National Legal Center on both these points.

Justice Was the Most Important Issue in Lawrance

This case was the first to involve the National Legal Center in its own locality. Heretofore, we had participated in "right to die" litigation arising in other states; thus we were removed by geographic distance from the dynamics and stresses of controversy typically generated by those cases. In the Lawrance case, however, after the local public learned we not only would raise the independent counsel issue but would also advocate Lawrance's right to live, controversy surrounded us.

After the news of our involvement broke, friends of mine would ask me why I was "interfering" with the Lawrance family's decision and second-guessing a trial court ruling in the family's favor. During this period, I had to defend myself not only as a legal advocate before a court, but as a friend before friends.(19)

After one particularly challenging conversation with a friend, I decided to clarify my views by writing them down. My response was essentially this: the National Legal Center had entered the case to see that justice was done. I fleshed out this reflection by writing the following:

Why have I entered this case along with lawyers from the National Legal Center for the Medically Dependent and Disabled, Inc.? The question is a good one and deserves an honest and reflective response.

The Lawrances believe that withholding food and fluids from their daughter is in her best interests. They believe that their assessment of Sue Ann Lawrance's best interests is a loving one. Yet, the best interest question is not only a question of what is loving, but also is a question of what is just. Whatever is loving must conform with justice. The two values are linked, and are not mutually exclusive. They support each other and define each other. A loving decision therefore should be a just one.

That is why we are in court on Sue Ann Lawrance's behalf, to ask the courts to help determine what is just for Sue Ann Lawrance. The question of justice is not a private issue and is not easily resolved in isolation from public reflection. No one has exclusive authority to determine what is just for another person. Even in the family context, the interests of each member are not always identical. Society has a role in this case because justice is a societal concern. How we treat one another, including our own family members, has social ramifications.

Indeed, the Lawrance family itself recognized the public nature of life and death decisions. We learned about this case because the family went to court. By going to a judge to approve the withdrawing of food and fluids from Ms. Lawrance, the family correctly invited public scrutiny.

We do not hold claim to all the answers, nor is it my role as limited guardian to tell the family what I think is right or just. My colleagues and I are guided in this case by the principles of due process and equal protection found in our laws. My duty as limited guardian therefore is this: to appeal the question of what is just under our laws for Sue Ann Lawrance to the appropriate arbiters of justice, the higher courts.

Sue Ann Lawrance deserves to be represented in court by an independent guardian; she did not have separate representation in the original hearing held at the parents' request. Her right to care and treatment should be protected from an unjust waiver, however unwittingly or lovingly intended. To withhold basic care from Sue Ann Lawrance solely because she is permanently disabled would be unjust. I trust that those who disagree nevertheless will find both the question of justice, and the goal of seeking a just outcome, appropriate to this case.(20)

These reflections guided me through the gales of controversy generated by this case. Reflecting on and communicating about justice clarified the issues for me and defused the emotional ardor of the debate in my encounters with others.

Two encounters come to mind. The first occurred when I was on the stand during the Marion County Superior Court hearing to consider Mullins's resignation as limited guardian and my succession. The Lawrance family's attorney, Bryce H. Bennett, Jr., was questioning me about my involvement in the case. He asked me whether I would consult the family about their views of Sue Ann's best interests if I were appointed as her guardian. I responded that I would not because my role would be to serve as her legal advocate, not her medical provider, and "[t]he family doesn't need us barging in." Bennett declared that "barging in" was exactly what I would be doing if I were appointed guardian. My next response was picked up by the press in "sound-bite" form: "Avila responded, 'Matters of justice are not...