Despite the attempts by the media to make Karen Ann Quinlan a “heroine” for the right to die movement, it may very well be that this unfortunate woman was the victim of medical abandonment, or even “sentimental homicide.” For there are troubling ethical questions about her lapse into unconsciousness. There are ethical questions about her care while unconscious. And there are ethical questions about her dying.
Dr. Ronald Cranford once pointed out that physicians may be setting in motion self-fulfilling prophecies when they make pessimistic diagnoses of the unconscious. Dr. Cranford diagnosed a patient, Sgt. David Mack, as being hopelessly comatose, yet Mack recovered much of his neurological functioning later on. Cranford wrote: “We say that patients don’t recover if they show no signs of improvement after six months. Well, maybe the reason they never recover is that they’ve never been given the opportunity to recover. We decide not to treat their complications and they die. Mack got much better nursing care for a longer period of time, because the case got a lot of publicity. If he’d been treated like everyone else, I don’t think he would have stood a chance.” Given more aggressive treatment and rehabilitative efforts, might Karen Ann Quinlan have been more like Sgt. David Mack? Might she still be alive today?
On December 17, 1975, the Associated Press reported that Miss Quinlan appeared to have been beaten and assaulted the night before she was admitted to the hospital the previous April. What is remarkable about this episode is that her parents “saw no relevance” in determining more precisely what induced the coma: she was known to have been associating with individuals prone to violence. A number of authors said that her coma was mysteriously induced, but there has never been a satisfactory account given for the relationship of Miss Quinlan’s beating to her lapse into unconsciousness. One wonders if these episodes had anything to do with the decisions to allow her to curl up into a “fetal ball”?
Another disturbing element of her care concerns a brief filed by Morris County Prosecutor Donald Collester in October, 1975, raising the question of whether she truly was in a coma. In his brief Collester stated that Miss Quinlan “reacts to externally applied stimuli; she has spontaneous respiration and muscular movement; she reacts to pain; she had reflex movements such as swallowing and blinking, and she does not now nor has she ever had a flat EEG.” But very little has been said about his brief.
Recently, Ladies Home Journal reported a number of facts about the care at her nursing home. Was she allowed early on to curl up into a “fetal ball” because of a failure to provide a simple range of motion exercises? It is clear that she did not have much, if any, stimulation in her room. She remained in a locked, dimly lit 8 x 10 room with the shades drawn, and with nothing but a painting and a vase of silk flowers in the room—hardly an environment to stimulate improvement.
The Journal article reported that Miss Quinlan restlessly twisted her head from side to side, and her face gave a hint of awareness. Her eyes darted wildly and would often follow sounds. When a favorite song, Judy Collins’ “Amazing Grace,” was played, her eyes would roll back in her head until the last note was played. Visitors had to be careful not to bump the bed because that would startle her.
Although doctors claimed that she was not in pain, she was evidently intensely uncomfortable. She sometimes gasped for air and grimaced because of the tracheostomy tube in her throat. Early in her convalescence Joe Quinlan saw tears rolling down her cheeks. It was only in 1980, four years after her lapse into unresponsiveness, that she was taken for a CAT scan to determine what level of brain damage she had incurred.
While her parents probably had her best interests in mind, it is not clear if they pursued an aggressive course of rehabilitation that might have made her more responsive. This is important because there is growing evidence that comatose patients can enjoy some aesthetic, emotional, sensual and intellectual pleasures at levels which others cannot comprehend. The enduring case of Sharon Seibert has shown that these very vulnerable patients may also experience fear, pain, loneliness and despair. We know now that many of these patients improve through aggressive therapy and rehabilitation—that is, contact with people who are devoted to their improvement. Thus it is not idle to wonder whether Miss Quinlan would have been more responsive and would have lived longer if more aggressive rehabilitation had been given to her.
Karen Quinlan’s weight dropped as low as 60 pounds and was sustained at 70 to 73 pounds. Is it surprising that she frequently suffered from infections by being allowed to become so gaunt and haggard? Could this have been due to insufficient provision of nutrition right from the outset of her care? The science of parenteral feeding has developed to the point that normal body weight can be maintained in practically all patients. If proper exercise is given, and if adequate nutrition is provided and the body is not assaulted by potentially lethal infections, then there should be no reason for body weight to drop so low.
It was reported that Miss Quinlan suffered more distress in her last few weeks than at any previous time. It appears that she may have been less the victim of medical technology than of medical abandonment and neglect. She did not die suffering from the aggressive assaults of high technology, but from possible neglect resulting in severe contractures, weight loss and pulmonary insufficiency that developed from a treatable lung infection. What is peculiar about her fatal infection is that she had previously developed similar infections, but they had been successfully cured. For a month and a half before she succumbed, she was denied antibiotics for these sorts of infections. Did she really die with dignity, or was not her death actively brought about by a degrading denial of routine care and the most basic and elemental resources of human life?
Recently philosopher Daniel Callahan argued that the theoretical debate on the right to terminate treatment for the dying is over, even though practical questions remain. I do not think this is necessarily the case. There has almost always been agreement that we have a limited obligation to treat the dying. But a real debate is raging today as to who is “dying.” Some would say that the dying are only those for whom no cures remain. Others would say that the dying are those who have lost consciousness. Still others would contend that the dying are those who have lost significant levels of neurological functioning. The death of Karen Ann Quinlan raises questions about treatment of the dying because it is not at all clear that she was in fact dying. In spite of that, routine, customary and ordinary life-sustaining medical treatments were denied her.
Several months ago in Minneapolis, a prime-time television debate on the treatment of an elderly stroke victim was aired; 44% of the viewers were in favor of continuing treatment. That indicates that there is no clear consensus about withholding treatment from incompetent, helpless, terminal and debilitated patients. Debate on this issue continues primarily because there are still serious questions as to whether many who are denied medical treatments are legitimately allowed to die, or are rather the victims of medical abandonment or perhaps even “sentimental homicide.”
The debate on providing medical care continues because terminating treatment for elderly, vulnerable and medically dependent persons is now being proposed for social, economic and demographic reasons. Andre Wynan, the secretary general of the World Medical Association, noted a short while ago that many are proposing euthanasia by the twenty-first century in order to maintain the economic health of the world’s health care delivery system.
One of the primary reasons why euthanasia must be considered, in the minds of some in the medical profession is because our population is getting older. To maintain the youthfulness of Western societies, some claim that programs to eliminate the elderly must be considered. But in America, abortion on demand has killed off one third of the youngest generation. If abortions continue at the present rate, they will kill off more than 48 million people between the ages of zero and 36 by the year 2009. This will happen at the precise time when we will need these people to support large numbers of elderly and medically dependent persons. Sound demographics alone argues that this is the time to call a moratorium on abortion rather than to begin killing off the elderly to save the economic efficiency of our health care delivery system.
The debate over terminating care and treatment for the infirm and dying continues, despite what Dr. Callahan has asserted. At the present time, there are many medically dependent and vulnerable adults in our society who easily could become medical hostages wholly dependent on the mercy of health care providers, if strict standards of medical practice are not upheld. The death of Karen Ann Quinlan, surrounded by many unanswered questions, should cause all of us to wonder if the debate over the termination of medical treatment will result in making those who are the medically dependent more free or whether it will make them medical hostages.