American Medical News, Jan 13, 1992 v35 n2 p13(1)
MD shares personal experience in treatment withdrawal. (Kenneth Smith; care of patients in irreversible vegetative state) Brian McCormick.
1992 American Medical Association
To advocated of a family's right to withdraw life-sustaining treatment from irreversibly comatose patients, Kenneth Smith, MD, is a hero.
The chief of neurology at St. Louis University offered frank and personal testimony at a recent hearing in the most high-profile "right-to-die" case now before the courts.
The 21-year-old Busalacchi sustained severe brain damage in an auto accident 4 1/2 years ago. Her father is seeking the right to make medical decisions on her behalf, including withdrawing her artificial feeding and hydration. The state wants to block any such move.
An expert witness who has treated Busalacchi since 1987, Dr. Smith told Probate Judge Louis Kohn that she remains in a persistent vegetative state. The state Supreme Court had asked Kohn to determine Busalacchi's condition after lawyers for the state said she was no longer in a persistent vegetative state.
Dr. Smith testified that hospital administrators and staff who claimed to witness voluntary responses by Busalacchi -- such as smiles and nods -- were practicing "self-delusion." Kohn said she was "frozen in time," and that her family had the right to make medical decisions for her. The family is awaiting a state Supreme Court ruling before withdrawing treatment.
But some of Dr. Smith's most gripping testimony did not involve his assessment of Busalacchi.
When the state asked about his qualifications to assess Busalacchi's condition and the effect of removing nutrition, the neurologist gave a general answer, focusing on his professional training and experience.
But he also told a personal story. In recent months, he said, he had been involved with several patients who "brought home to me the importance of decision-making and removing artificial food and water from patients."
One case involved a massively brain-damaged and permanently comatose man whom Dr. Smith had treated for nearly two decades. When he and family members agreed to remove artificial feeding and hydration, Dr. Smith said, it was more than just the agony of letting go of a loved one that made the decision difficult.
"His family and I were constantly anxious about the fact that the state of Missouri might find out that we were doing this, and intervene with a court order to foce us to give artificial food and hydration to the patient," he said.
"The Supreme Courts of the United States and Missouri say that tube feeding can be removed only if there is clear evidence that the patient wanted it. How can this patient, whose brain was so terribly damaged at age 10, make any decision?"
The same issue is central to the Busalacchi case. Family lawyers argue that because she had been unconscious since age 17 and was to young then to express wishes, her father should be allowed to make medical decisions on her behalf. But the state says Busalacchi's father is acting as the legal guardian of an adult, not the parent of a child. Therefore, it says, he can't take such steps without state approval.
Dr. Smith said there is only one difference between the cases where he has helped families end artificial feedings in Missouri and the cases of Busalacchi or Nancy Cruzan. With his patients, "the governor, the attorney general and the right-to-life extremists didn't find out about it."
But Timothy Kelly, a lawyer representing the state in the Busalacchi case, said the courts had a role to play because this case involved a guardian's decision. He said he could not speak to the other cases in which Dr. Smith has been involved, because he was not familiar with the facts.
But Kelly added that he was concerned by Dr. Smith's admission that in at least one case, he failed to follow the stated hospital protocols before terminating treatment. "For an individual to make these kinds of decisions on their own sounds dangerous to me, and I would hope that someone within the hospital is following up on it."
But the Rev. Kevin O'Rourke, head of the health care ethics center at St. Louis University, said the treatment decisions were not made surreptitiously. "I was involved in each of the cases Dr. Smith discussed at the hearing, and each decision was reached through a very open process that involved the family, physicians, ethical experts, nurses and other staff," he said. "We didn't call the press, but we didn't operate in secret, either."
Dr. Smith also outlined a scenario that those who support the right to withdraw artificial feeding and hydration often cite as an ironic consequence of denying that right.
The neurologist wanted to perform a tracheostomy and gastrotomy on a brain-injured farm-accident victim, to facilitate a ventilator and tube feeding. The patient's family at first refused, fearing the patient would be forced to stay alive in an unconscious state.
"After a three-hour conference, Kevin O'Rourke and I were able to convince family members to do the procedures, but only after promising that if the patient showed no sign of recovery in six months, we would remove the tubes," Dr. Smith said.
I told them we were prepared to go to jain to provide proper care to the patient, and we were." The patient is now recovering reasonably well.
But perhaps Dr. Smith's most emotional testimony involved his own 27-year-old daughter, Jody, a patient with HIV infection and a terminal respiratory ailment. Dr. Smith described how he supported her decision to disconnect a life-sustaining respirator when she and her doctors agreed further treatment was futile.
The woman was given morphine to ease her pain, a choice Dr. Smith said should be available to any dying patient. "Many physicians are reluctant to offer morphine in that situation, for fear they will be accused of hastening death. I think that is ridiculous. If a patient is dying, it is appropriate and right to administer pain medication."
Minnesota neurologist Ronald Cranford, MD, who has been a consultant in the Busalacchi and similar right-to-die case, called Dr. Smith's testimony outspoken and courageous. "It's wonderful to see that even in a state like Missouri, where backward attitudes prevail, there is a doctor who steps up and says he does the right thing regardless of the consequences," he said.
But state attorney Kelly takes issue with Dr. Cranford's assessment of Missouri law. In interpreting the law in the Cruzan case, the state Supreme Court "determined that the preservation of life was imperative, to the extent that, if they were to err, they wanted to err on the side of preserving life," Kelly said. "Now some people may see that as backward; I guess it depends which side of the fence you are on."
Although the Cruzan decision limits rights of families in Missouri to make end-of-life decisions for incompetent patients, Dr. Smith does not back a health-care-surrogate law, like those in other states. On the contrary, he worries that legislative involvement might open the door to further restricting patient and family rights.
"All we need is for the Supreme Court in this state to rule that surrogates can remove artificial feedings from terminally ill patients and patients in a persistent vegetative state."
Rather than lobbying for laws, Dr. Smith said, he would like to see Missourians march on the state capital to protest "the hundreds of thousands of dollars spent to care for patients in persistent vegetative states and the money spent to hire private lawyers to block families from doing the right thing." He shared his experiences as a doctor who has helped patients and families who wanted to withdraw respirators, tube feeding and other life-sustaining treatments in Missouri, one of the states with the most restrictions on when such care can be withdrawn. But he also testified as a parent, describing how, only a few months ago, he supported his dying daughter's decision to disconnect her ventilator. Dr. Smith's comments came at a November 1991 hearing in the case of Christine Busalacchi, whose care is the focus of the latest "right-to-die" debate in Missouri.