February 01, 2001
Message from the Director: practical ethics becomes personal
At this writing my family and I are still recovering our equilibrium after the funeral and burial of my wife’s oldest sister, who died after four weeks of intensive care. Suffering from a rare lung infection, she was in an induced coma for most of the last four weeks of her life. In a state-of-the-art hospital she received all of the antibiotics available for the combination of infections and threats she faced. She was intubated for the first two weeks of this struggle, and then breathed with a tracheotomy until her death. The decline in her condition could be measured by the increasing percentage of oxygen required to support her breathing.
A time of prolonged and ambiguous illness of this sort creates great stress for a large extended family. Barbara did not have a living will or advanced directives. There were no written or legal documents expressing her desires should she find herself in this kind of situation. Her son and daughter, who lived close by, had little experience with this kind of challenge. Members of the extended family included a retired surgeon who had a lot of experience with these matters and good rapport with the physicians and nurses who attended Barbara. But because of professional respect and ethics, he monitored the case, but didn’t interfere with decisions about her care.
In the third week of her hospitalization it became clear that the family, and particularly the son and daughter were going to face a difficult set of questions. In the stress and fatigue of trying to carry on their daily work and keep their families going, there had been little conversation about “what if?” and “when?” Stress and living in the face of death can combine to revive and exacerbate old patterns of conflict and grievance. This kind of conflict was beginning to happen in the family system, especially between the two adult children whose responsibility it was to make decisions with the physicians about the possibility of terminating treatment and allowing a natural death.
Visiting with the family in that third week, I recalled all of our work at the Center for Ethics on issues of quality of life at the end of life. It was clear that we needed some kind of intervention to help those primarily responsible for deciding to work together toward agreement about the approach they would take.
We called the hospital ethicist, who happened also to be the head of Chaplain’s Services. Tom Glisson agreed to meet with the family. He began by expressing his concern and support for the family, and getting acquainted with them. Then he began to talk about an approach to making the difficult decisions that lay before us. He first clarified the legal situation. In that state, in the absence of advanced directives, the next of kin have the responsibility and authority for making decisions about prolonging life support or affirming that further prolongation of life is futile. Since our sister was a widow, that responsibility fell to her adult children. Since she had made no determination as to which of them should have the majority responsibility, they needed to make the decision together, both agreeing with the path they chose.
Glisson asked the adult children if their mother had expressed to them her desires should this kind of situation ever arise. Both said she had not. Then he made it clear to them that their acting as surrogate on behalf of their mother in this matter required that they try as best they could to clarify what her wishes would have been in this matter. They were not to decide on the basis of their inclinations or desires, but do their utmost to decide as she would have chosen, were she sapient, fully apprised of all of the medical indications, and fully capable of comprehending her situation and prospects.
The family fully honored the two young adults’ responsibility in this decision. In the last week of Barbara’s life, they postponed withdrawal of the arsenal of antibiotics she was receiving to allow the physicians to try one more strategy against the powerful sepsis that was destroying her lungs. When that failed, in concert with their physicians they agreed that further treatment efforts were futile and would be cruel to their mother. With a gradual weaning from oxygen, Barbara lived for another six hours, and then died quietly.
The ethics consult with Chaplain Glisson provided a much needed framework for Barbara’s children, and the larger family, to think about and work toward fulfilling their responsibilities of making decisions about her further care, and allowing the course of her death to proceed. The framework facilitated their coming to clarity about their responsibility to act on behalf of their mother’s desires, as closely as they could construct them. It gave the siblings a place to meet and reconcile their differences about the making and timing of the decision. It helped them, and their larger family, stand together in a reconciling solidarity in the face of the great sadness they shared.
Ethical theory and intervention frequently do not provide ready-made answers or solutions regarding what path is right or wrong. Often, as in this case, ethics provides a framework for decision-making that enables persons or groups, with differences of perception and involved in emotional stress, to achieve a calm and consensual perspective within which all involved can move toward a decision that has both emotional and intellectual integrity.
Some of the most important work of the Center for Ethics, through the Health Care Ethics Consortium of Georgia, focuses on encouraging attention to end of life decisions and policies. Among the many dimensions of their work, Kathy Kinlaw and her associates are strong proponents for each of us, and our families, to take the time and invest the effort to prepare advance directives. We should do this so that those whom we love will have more knowledge and preparation to face the time in our lives when decisions may have to be made in our behalf.
Thanks for your interest and support for the Center for Ethics,
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