Who decides the time to die?

Arthur Caplan

December 21, 1992|By Arthur Caplan

THE names are familiar -- Quinlan, Brophy, Lawrance, Delio, Busalacchi, Rosebush, Cole, Wanglie, Mack, Amerman. These are the names of those Americans who pioneered a strange frontier, the boundaries of the right to die.

I have been invoking these names for many years in classrooms, lecture halls and articles as a kind of abstract shorthand -- easy references to the key legal landmarks governing the right to say "No more" to medical technology. Those days are over.

The University of Minnesota Center for Biomedical Ethics recently organized a conference to examine issues around the right to die. In addition to the usual experts, some of the families who had lived through the legal battles, the protests and the media hounding were invited to speak. More than a dozen agreed to do so.

What they had to say about making life-or-death decisions for their spouses, sisters, sons and daughters, sisters- and brothers-in-law spoke volumes about how important it is to keep patient and family perspectives in the forefront of ethical debates about health care.

The stories of three family members were especially poignant. Joe and Julia Quinlan; Joyce, Christy and Joe Cruzan; and Pete Busalacchi made a convincing case that families must have primacy of decision-making authority when a patient is not capable of directing his or her medical care.

The Quinlans spoke with great dignity about their decision to remove a respirator from their daughter Karen Ann.

Before deciding on a course of action, they consulted their priest, their other children, their friends and their hearts. They decided that no decision would be made unless the entire family agreed.

Ultimately, they decided that, knowing their daughter as they did, she would never want to remain a prisoner to technology that seemed to be a burden to her. The seven years that have passed since they won their court battle to allow a respirator to be stopped and Karen Ann died have not diminished their grief or confidence that they did the right thing.

On Jan. 11, it will be 10 years since a state patrolman found Nancy Beth Cruzan, then 25, lying unconscious and without any detectable signs of life by the side of her car on a rural Missouri road. Dec. 26 will be the second anniversary of her death.

She would have died sooner but for a battle between the Cruzan family and the Missouri Rehabilitation Center in Mount Vernon over the removal of her feeding tube.

On Jan. 25, 1990, the U.S. Supreme Court ruled 5-4 that life-supporting technology, including food and fluids, could be removed from Nancy if there was clear and convincing evidence beyond what the family said that this is what she would have wanted.

Christy said the family was surprised. They could not understand why their views -- the views of a close and loving father, mother and sister -- would not be sufficient evidence of what Nancy would have wanted.

Joe Cruzan, still angry about the intrusion of so many strangers into his personal life, felt as if the courts had "invited me to the Super Bowl (and) assigned me a seat in the last row of the bleachers while the game was played with my ball."

The Cruzans never wavered in their view that their fight to allow Nancy to die was what Nan would have wanted. Joe talked movingly about visiting her grave after all the press and protesters had left to tell his daughter that she "had just run ahead of the rest of the family but they would all catch up with her eventually."

Surely one test of who ought to have the authority to make decisions for incompetent patients is whether or not they will ever visit a grave or shed a tear once the lawyers and the cameras go away.

Pete Busalacchi is still embroiled in a battle in the Missouri courts over the right to end life support for his daughter, who lies unconscious and comatose in a St. Louis nursing home.

Pete wondered how anyone who had not taken her to soccer games, been at her birthday parties or taught her to drive in an empty parking lot could ever presume to have more legitimate authority about the course of her medical care than he does.

After listening to him and the other families -- after hearing their expressions of love for those they have lost and outbursts of anger against strangers who felt no compunction about intruding into the most intimate of family matters -- I think the only answer is that strangers have no place at the bedside.

Arthur Caplan is director of the Center for Biomedical Ethics at the University of Minnesota Medical School.

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