Snuff Film

Jack Kevorkian again has dared authorities to make him a martyrfor the right to die. By killing Thomas Youk and persuading CBS toair his home video of the event on "60 Minutes," he has tauntedlocal prosecutors, promising to go on a hunger strike if he isjailed. Millions of Americans consider him a hero. The Internetmessages and radio call-in shows reflect that most Americans applaudKevorkian's bravado. Some have compared him to Jonas Salk or AlbertSchweitzer.

As a physician who has worked in hospice and palliative carefor more than 20 years, I watched the evening's infotainment with asense of surrealism and revulsion. Kevorkian administered the lethalinjection with cold precision, using the same drugs and in the samesequence employed in capital executions. He narrated the video withfamiliar words of compassion. Yet what we saw was essentially asnuff film bearing no more resemblance to authentic caring thanhard-core pornography does to true love.

Airing when it did, the broadcast hit me hard. The week beforea good friend telephoned with news that her father had just beendiagnosed with ALS, or Lou Gehrig's Disease. He is a delightful man,fiercely independent, proud and perhaps slightly vain. Though hiscurrent symptoms are mild, she knows he's already begun mulling overhis options, including the possibility of a future suicide. Becauseof my clinical experience and outspoken opposition to legalizedassisted suicide, she wondered if I thought the diagnosis of ALSmight not be an exception. What should she tell her dad if he askedfor help?I shuddered to think of my friend's father watching Kevorkiantake Thomas Youk's life. The real message of the broadcast was thatbeing frail and too ill to take care of oneself is undignified andthe best thing for the hopeless person and his or her family is aquick exit. This is not what he needs to hear.ALS progressively robs people of their ability to eat and,eventually, the strength to breathe. Still, as diseases go, thereare worse ways to die. Pain, if it occurs, is typically mild andeasily managed. Simply by refusing feeding tubes and mechanicalventilators, people with ALS can be confident of dying naturally andquite gently.Of course, as with any incurable illness, an ALS patient'semotional suffering can be profound. In today's world, dying peopletoo commonly feel isolated and outcast. If asked, they may tell youthat being seriously ill is embarrassing. They are aware theirappearance makes healthy people uncomfortable. I've heard manypatients express feelings of shame over their physical dependenceand guilt for being a drain on their families and on society.Suffering of this nature is common and understandable. So tooare ways of helping people work through these feelings. What thebroadcast didn't show -- and what Kevorkian doesn't know -- is thatMr. Youk's life might have concluded differently. His story was notover until Jack Kevorkian hastily scrawled, "The End."During my friend's call, as my mind raced in search ofsomething to say, I thought of the care families give to infants andtoddlers. Utterly helpless and incontinent, they are pampered by us,lovingly. When the ceaseless demands of child care leave usexhausted, we call on our family and friends for help.I suggested she start with the obvious, telling her dad howmuch she loves him. I advised her to get her mom and her brotherstogether and say to him directly and plainly that he could never beundignified, that as awful as the news was, they would go throughthis ordeal together. I encouraged her to tell him that his care wasa burden their family would willingly bear. I know them well enoughto know that it's true -- as it is in most families. If his wife orchild were the one who was ill, he would instinctively know thatthis is what families do. But the person who is ill needs explicitlyto hear it.It is in baby boomers' vital self-interest to transformcultural attitudes that underlie the suffering associated withillness and disability and to develop enlightened examples of caringfor one another. Demographic trends are rapidly increasing thenumber of older, chronically infirm Americans in need of care.Simultaneously, the proportion of healthy adults available to lookafter family members is plummeting.Millions of us seem destined to tumble into the gap betweenthese trends and end up spending our last months warehoused inimpersonal institutions. We urgently need to expand hospice care andcreate new modes of assisted aging and options for living and dyingin place and in peace.Kevorkian's act of civil disobedience is a violent assault onthe heart of our cultural values. Killing Thomas Youk was also aserious crime. Oakland County Prosecutor David Gorcyca was right tobring charges.If Jack Kevorkian carries out his threat to stop eating, hewill be exercising a right that each of his "patients" has had.Ironically, in the process he will learn that there is no pain orphysical distress associated with dying from malnutrition. I hope inhis last days, whenever they may occur, Jack Kevorkian iscomfortable and able to feel dignified despite his weakness,imperfection and human frailty. None of us deserves less.The writer is a founding member of Partnership for Caring, aconsumer advocacy group to improve end-of-life care.