Two factors determine how people die: the diseases they have, and who they are. In any given case, these two factors vary in salience. With sudden, terminal diseases like massive heart attacks or apoplectic cerebral hemorrhages, the disease dominates, and mostly obliterates, personality. Then does the power of nature, the “great equalizer,” render alike the death of rich and poor, wise and foolish, brave and timid.
But with slowly advancing disorders—cancer, liver failure, AIDS—who you are powerfully affects how you die. Temperament and character, apprehensions and commitments, resources and support, shape the response to symptoms. Indeed, from the point of view of society, the behavior of one patient suffering from an incurable disease can differ so radically from that of another suffering from the same disease as to influence our attitudes toward life and death themselves.
In medicine, these are commonplace ideas; the individuality of patients with similar diseases was emphasized as long ago as Hippocrates. But they have achieved a new resonance with the recent debates over euthanasia and assisted suicide, and with widespread popular concern over easing the final stages of life for the terminally ill.
Two cases in particular commend themselves to our attention. The first is that of Thomas Youk of Michigan, who in the fall of 1998 was killed by Dr. Jack Kevorkian. This act of euthanasia was recorded on videotape and, on Sunday, November 22, witnessed by over sixteen million people on the CBS news program, 60 Minutes. The second case is that of Morris S. Schwartz, a former professor of sociology at Brandeis University and the eponymous subject of Tuesdays with Morrie by Mitch Albom,1 a book that has been on the New York Times best-seller list, mostly in the number-one position, for over a year.
What connects the two cases is that both men were suffering from the same neurological disease: Amyotrophic Lateral Sclerosis (ALS), commonly referred to as Lou Gehrig’s disease after the great New York Yankee first baseman who died from it. And yet, though they had identical afflictions, the contrast in the final moments of their lives could not have been sharper. The first man’s death was ghastly: Kevorkian prepared the site by persuading the patient’s family to leave home for a few hours, and then, when he had him alone, killed him by intravenous injection of a poison to stop his heart. By contrast, Morris Schwartz, whose advance through the terminal stages of ALS is almost as well recorded as that of Thomas Youk, died naturally and in peace, surrounded by friends and family.
Each of these two deaths thus makes a cultural statement. Judging those statements, however, is not quite so straightforward an exercise as it might appear.
Other than how he died, we know very little about Thomas Youk. He was a Catholic; he restored and raced vintage cars; he was said to have led an active life. Members of his family, who spoke about him on 60 Minutes, described him as a “fighter.”
Youk had been suffering from ALS for two years. His family called Kevorkian because, they reported, he was “in terrible pain, had trouble breathing and swallowing, and was choking on his own saliva.” On his first visit, Kevorkian performed the most cursory of medical examinations, confirming only that Youk showed severe paralysis of the limbs and had difficulty breathing and speaking. Concluding that he was “terrified of choking,” Kevorkian had him sign a consent form for euthanasia, “to be administered by a competent medical professional in order to end with certainty my intolerable and hopelessly incurable suffering.” Two nights later, he returned to do the job.
It was, of course, not his first killing. Over the last decade, Kevorkian has been actively soliciting people to enable him to “assist” them in committing suicide, going so far as to advertise his services in newspapers. By means of a device—his so-called Mercitron—capable of delivering intravenous poison when the patient presses an activating button, he has fostered the deaths of over 130 people. He defends his behavior as “symptom” relief—his treatments, he says, are not intended to kill but to relieve the patient’s distress—although his favorite medication, potassium chloride, has no role in the relief of symptoms other than by stopping the heart. This justification has nevertheless satisfied three juries before whom he has been tried for murder.
When asked by a Michigan paper if Youk had had any last words, Kevorkian, the physician closest to him in his final days, replied, “I don’t know. I never understood a thing he said.” What he did know was that Youk and his family had reached their self-proclaimed limits in tolerating the symptoms of disease. And that, for his purposes, was enough. For what Kevorkian was seeking and had found in Youk was an individual who could be used to challenge the laws of Michigan against euthanasia as he had previously challenged the state law against assisted suicide. His true intent, in other words, had less to do with relieving the suffering of an individual than with making euthanasia, as he has put it, a “fundamental American right—part of life, liberty and the pursuit of happiness.” Youk was a means to that end.
If we know little about the man who agreed to become Kevorkian’s “poster boy for euthanasia,” as Mike Wallace referred to Thomas Youk on 60 Minutes, we know a very great deal about Morris Schwartz. Not only was he a well-regarded sociologist with many publications to his name, but his dying and death were the subject of more than this one book, Tuesdays with Morrie. ABC-TV’s news program Nightline had interviewed him three times over the two-year course of his illness, and television viewers had come to appreciate his lively and brave demeanor. It was, indeed, the first of these broadcasts on Nightline that impelled Mitch Albom, a sportswriter for the Detroit Free Press who had studied with Schwartz at Brandeis, to begin visiting his former teacher weekly at his home outside Boston. Not only did Albom go on to write a best-seller about that experience, but Schwartz’s aphorisms on sickness and death have also been collected in another book, Letting Go: Marrie’s Reflections on Living While Dying.
Tuesdays with Morrie is a small book—192 pages long. It begins by describing Morrie’s life before his illness and the circumstances in which he and Mitch met. (Everyone goes by a nickname or a diminutive in this book—not only “Morrie” and “Mitch” but “Rob,” “Gordie,” “Charlie,” even “Rabbi Al.”) Then, in a series of fourteen chapters, we are given vignettes of the Tuesday visits. Through this record of the conversations between the two men, we become progressively enlightened as to Morrie’s attitudes toward dying and death as well as toward such matters as the expenditure of emotion, forgiveness, family, and regret. The final chapter describes Morrie’s death and funeral.
Although Tuesdays with Morrie is mainly a vehicle for Morrie to speak about his illness and himself, we also learn about Mitch and his family, and about Mitch’s reactions to the progress of his friend’s disease. The events of the sickroom and the way he and Morrie cope with them are graphically rendered, as are the suffering and death of an uncle of Mitch’s from pancreatic cancer. (Mitch’s younger brother, to whom the book is dedicated, has the same disease.) The net effect is to give us a picture of life in the round, and to bring home the blessed appropriateness of being able to die as we have lived—surrounded by friends, exchanging affectionate thoughts.
I will return in a moment to what, in Morrie’s case, those thoughts are. But it may be useful first to say something about the illness to which Morris Schwartz and Thomas Youk responded in so divergent a manner.
ALS is a grim, incurable, progressive neurological disease characterized by a gradual degeneration of the nerves that activate the muscles of the body. Its first symptoms can appear anywhere—in the arms, the legs, or around the mouth and jaw. But eventually and gradually it afflicts the entire body with a total atrophy of the muscles, ending in complete paralysis. Death comes from the weakening of the respiratory action of the chest and diaphragm, making breathing ineffective; if the patient is not maintained on a respirator, he will slip into a coma and die.
Although ALS is an illness that no one would wish on another, it is not the worst illness from which to die. Unlike, say, pancreatic cancer (of the kind Mitch describes his uncle and brother as suffering from), ALS is relatively painless. It does produce much discomfort from coughing, and from the aching of limbs that cannot change their position, but these can be ameliorated by good nursing care. The end itself is quiet. The muscles of respiration fail very slowly, and the patient usually has no sense of smothering but rather is gradually narcotized from the accumulation of carbon dioxide. Death often comes at night; the patient may fall asleep in the evening with no obvious change in his condition, and then just fail to awaken.
Moreover, in contrast to other incurable diseases, ALS does not produce delusional depressions of the kind that can crush the spirit by triggering attitudes of self-blame, hopelessness, and a profound sense of the meaninglessness of all human action. These depressions, which derive from the brain disorders that can accompany AIDS and Huntington’s or Parkinson’s disease, are unresponsive to efforts at distraction. They represent a form of insanity that can provoke suicide and that demands psychopharmacologic attention.
This is hardly to say that patients with ALS are not often discouraged or greatly dismayed. Such symptoms are reported frequently in Tuesdays with Morrie, and the family of Thomas Youk also suggested that he was suffering from them. But moods of this nature differ in kind from delusional depression, and are more properly thought of as aspects of demoralization: emotional reactions, provoked by actual circumstances, that everyone has experienced in minor or major forms in life and that can be relieved by thoughtful psychological assistance, professional and amateur alike. Many patients with ALS can throw off their sad feelings for long periods of time, just as Morrie did—sometimes through their own efforts, usually with help from others who understand them and what they are undergoing.
Another vital characteristic of ALS is that its victims have no loss of cognitive power. Nothing in the disease prevents them from thinking and planning as before. Conceivably, this in itself can become a burden, since patients are alert to the relentless progress of their disease toward death. But in many cases, the retention of cognitive power offers a means of helping them. Morrie, for example, was promptly informed of his future when the diagnosis of ALS was made; although his intense awareness of his fate did bring on intermittent feelings of demoralization, his clarity of mind permitted him to take charge of his situation, put aside self-pity, and undertake activities that encouraged him and gave him purpose.
Patients with ALS can do valuable work. Mayor Fiorello La Guardia made Lou Gehrig an officer of the New York City Parole Board after the Yankees—true to type, even then—cut him off once he could no longer play. He worked effectively at that job for a year. Steven Hawking, the famous professor of astronomy at Cambridge University who suffers from a more slowly progressive form of ALS, continues to do cosmological research, write, and teach with the help of advanced electronic devices. Nelson Butters, one of the most talented and productive American neuropsychologists of recent decades, edited journals and supervised psychological research right up until the last weeks of his life.
An especially ironic example is offered by the case of Noel David Earley of Rhode Island, who in 1996 began to demand euthanasia for his advancing condition and found a health worker to provide a syringe with which he might commit suicide. The date on which Earley planned to kill himself, he announced, was December 4, 1996—a date still far enough in the future as to give him ample time to tell his story and protest the laws forbidding euthanasia. In the intervening months he testified before the state government and the Rhode Island Medical Society, and contacted the American Civil Liberties Union to gain its help in asserting his “right to die”; he was given plenty of airtime, and plenty of ink. But when December 4 finally came, Earley decided he had not adequately explained his position. He thereupon set a new date several weeks ahead. Friends now had to carry his shrunken and paralyzed body around his apartment and to interviews at which he continued his protest against the state of Rhode Island and its uncivilized laws.
Finally, after a second postponement of his announced self-murder, Earley unexpectedly died in his sleep. Friends said he would surely have killed himself eventually, and they themselves were surely prepared to fight for his “right” to do so. But many also conceded that he had been at his most cheerful when crusading against the laws that deprived him of this right; he was never so chipper as when fighting to die.
The lesson is simple. ALS is a bleak condition, but give a person who has it a reason to live, and he will keep going to the end, distressed intermittently by its burdens but aided by any sense of purpose and grateful for any help. And that, indeed, is where medicine enters the picture. Specialist physicians know the progress and succession of symptoms, and the treatments that can relieve them. Skilled nurses can administer daily care—delivery of medications, bathing and cleaning the body, managing the environment of the home or hospital room—in ways that mitigate both the symptoms of the disease and its psychological complications.
No such attendance followed poor Thomas Youk. Jack Kevorkian, it is important to note, was trained as a pathologist, and had no practical experience in caring for terminally ill patients before he embarked on his crusade to become their deliverer. He takes his moral authority, moreover, not from his role as a doctor but, as I have already suggested, from political ideology—and specifically from his understanding of the libertarian philosophies of John Stuart Mill, Thomas Jefferson, and John Locke. What more fundamental right, he asks, than the right to decide when to die? If, under the constraints of disease and suffering, “you don’t have liberty and self-determination,” he proclaimed on 60 Minutes, “you got nothing.”
All this, however, is a lie built on a terrible distortion. The distortion has to do with the way Kevorkian drags his ideological heroes—Locke, Jefferson, Mill, and the rest—into a realm in which their political categories do not apply. As hard as it may be to tell the difference between “true” and “alienated” desires when we are in full possession of our physical and mental faculties, it is a thousand times harder when outside forces overwhelm the self, rendering it vulnerable to unreflective impulses. Among the reasons patients with dire illnesses turn to physicians for help is that their capacities for thinking and planning have been compromised. The responsibility for drawing distinctions under these circumstances lies at the very heart of medical practice. It is the duty doctors owe their patients.
In any case—and here is the lie—the real philosophy espoused by Kevorkian is a doctrine not of rights but of feelings. For in dismissing the role of the physician as a provider of reasoned guidance, as one who helps a patient differentiate good from bad, right from wrong, responsible decisions from impulses, Kevorkian “privileges” instead the momentary inclinations of the patient, who is most often in extremis. Kevorkian himself never reviews a patient’s full history; never considers the relief of symptoms, other than via death; never invokes contemporary medical knowledge concerning the management of a patient’s disease; and never reflects on the patient’s mental state or personal vulnerabilities. He also never considers how his own proposals and practices may influence a suggestible patient’s decisions. The propositions advanced by unsettled and possibly unbalanced minds he absurdly equates with the thoughts of free and reflective citizens, and upon these unbalanced minds he then grandly confers their “rights.”
What we are talking about, then, is a special kind of nihilism, and a special kind of atomism. In the Kevorkian world view, the patient is a solitary figure, related to nothing or no one beyond himself, with neither a past to honor nor a future to influence (a future, that is, distinct from his impending death). His desires, regardless of their sources and implications, regardless of how they might be affected by cool reflection or alleviating therapy, are the only factors that count. A man named Thomas Youk complains that he is tired of life under the conditions he faces; his family agrees; without studying the circumstances out of which these feelings were generated, and against which they might be evaluated, a man named Dr. Kevorkian kills him.
How have we, as a culture, come to this pass? . In a narrow sense, the question is easily answered. When we—doctors, family, and friends—endorse a patient’s feelings of discouragement, treating them as the most pertinent fact about him and leaving him without suggestions or plans for acting purposefully during what remains of his life, then we open the door to Kevorkianism. But surely—the reader may protest—we do not all act so callously. Thank goodness, no one ever thought of abusing Morrie Schwartz the way Thomas Youk was abused; and that makes all the difference in the world. The culture may not yet be so lost.
But we cannot really leave it at that. For the fact is that, in its own determinedly upbeat way, Tuesdays with Morrie is a disheartening book. True, for people seeking commonsense instruction, it may serve—from its sales figures, it clearly does serve—a useful purpose, akin to the purpose served, for the beginnings of life, by Dr. Benjamin Spock’s famous book on baby and child care. Between them, Morrie and Mitch also offer lots of good advice of a more general nature. They tell us to accept with grace the loss of dignity that accompanies serious illness: the odors and minor ugliness of the sickroom. They tell us to take our friendships seriously, and to make efforts and sacrifices to preserve them. And the like.
But their limitations are evident, and in the end disqualifying. Like Dr. Spock, Morrie and Mitch are strong on the hows and debilitatingly weak on the whys. As a professor, Morrie comes from the “group-process” school of social psychology—a doctrine that promotes a kind of therapy based on the vigorous exchange of off-the-cuff personal interpretations and frank, uncensored opinions. He seems (again like Dr. Spock) most at home in the 1960’s, a time when talk and self-display took on a life of their own and universities were transformed overnight from places where one learned what was known into places where the point was to discuss everything.
Discussion, indeed, is the keynote of Tuesdays with Morrie, if discussion is not too elevated a word for the psychobabble, mixed in equal parts of crude Marxism and empty hedonism, that fills its pages. Throughout, Morrie and Mitch talk about the defects of “our culture” (their term), deprecating it like a couple of old hippies. “We work too hard and are too ambitious,” opines Morrie one Tuesday. Or, “Money is a substitute for love for most people.” Or, “As I’m sitting here dying neither money nor power will give you the feeling you’re looking for.” Asked what might give you that feeling, he replies: “Devote yourself to creating something that gives you purpose and meaning.” Such as? Morrie does not say, and Mitch never thinks to ask.
“Accept what you are able to do and what you are not able to do.” “Learn to forgive yourself and others.” Never “assume it’s too late to get involved.” How the agonizing choices life puts before us can be negotiated, and tragic errors avoided, on the basis of such empty maxims is never examined by Morrie or Mitch. Their vocabulary is heavy on words like love, openness, compromise, “feelings”; light on duty, responsibility, accountability.2 What one especially misses in Tuesdays with Morrie, a book devoted to the subject of death, is any sense of awe in its presence.
The mystery of human existence—so poignantly felt by everyone at the great moments of birth, marriage, and death—is passed over by our two protagonists without so much as a murmur. At one point, Mitch asks Morrie his opinion of the biblical figure of Job, and of the God Who “made him suffer.” Morrie responds: “I think, God overdid it.” From a dying man who is himself showing considerable Job-like perseverance, this is a witty remark. Unfortunately, when it comes to interpreting life and death, neither here nor elsewhere does this highly educated man stop to ponder the great questions posed by Job, not least among them the question of whether there is anything beyond our selves that can judge us and our purposes, or imbue the choices we make with permanent significance.
“Naked I came from my mother’s womb, naked I shall return. The Lord gave, the Lord has taken away. Blessed be the name of the Lord.” Between Job’s dispassionate but sublimely connected thought and Morrie’s anodyne one-liners stretches an unbridgeable spiritual chasm.
Does it matter? Morrie, after all, died the way he lived. He was jovial and spirited; he hung in there; he lives on in the minds of his friends. So what if he talked a fair amount of nonsense along the way?
The real question, though, is whether any lasting strength can be gained from an account like this one—strength that derives from knowing ourselves (as Morrie and Mitch do not) to be the legatees of inviolable traditions, cultural and professional alike, as well as members of a vast and enduring human community that stretches back into history and forward into the experience of those yet to come. Morrie’s method of managing his own death is not to be disparaged. It worked for him, thanks to his innate pluck, and to the special arrangements available for his care. But how is that method, untied to principle, to tradition, or to any sense of larger human obligation, going to help those who lack his advantages: the weak as well as the strong, the lonely as well as the befriended, the tortured as well as the pain-free?
To the proponents of euthanasia and assisted suicide, the attitudes expressed in Tuesdays with Morrie offer, alas, no prescriptive resistance. They can be no more than a sweet interlude, a brief way station along the path paved by Dr. Kevorkian—and by all the kinder and gentler Kevorkians who are waiting a step or two behind. On that path, the signpost, brief and desolating, reads: You are alone.
1 Doubleday, 192 pp., $19.95.
2 In writing this book about Lou Gehrig’s disease, Mitch Albom, who has been voted America’s number-one sports columnist ten times by his colleagues, tellingly misquotes Gehrig’s farewell speech at Yankee Stadium on July 4, 1939. Gehrig said: “Today I consider myself the luckiest man on the face of the earth.” Albom has him saying: “Today I feel like the luckiest man on the face of the earth” (emphasis added). This little slip is of the essence of the solipsism that infects Tuesdays with Morrie.