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Articles and Interviews


The Washington Post
Snuff Film
Ira R. Byock, M.D.
December 6, 1998


Jack Kevorkian again has dared authorities to make him a martyr for the right to die. By killing Thomas Youk and persuading CBS to air his home video of the event on "60 Minutes," he has taunted local prosecutors, promising to go on a hunger strike if he is jailed. Millions of Americans consider him a hero. The Internet messages and radio call-in shows reflect that most Americans applaud Kevorkian's bravado. Some have compared him to Jonas Salk or Albert Schweitzer.

As a physician who has worked in hospice and palliative care for more than 20 years, I watched the evening's infotainment with a sense of surrealism and revulsion. Kevorkian administered the lethal injection with cold precision, using the same drugs and in the same sequence employed in capital executions. He narrated the video with familiar words of compassion. Yet what we saw was essentially a snuff film bearing no more resemblance to authentic caring than hard-core pornography does to true love.

Airing when it did, the broadcast hit me hard. The week before a good friend telephoned with news that her father had just been diagnosed with ALS, or Lou Gehrig's Disease. He is a delightful man, fiercely independent, proud and perhaps slightly vain. Though his current symptoms are mild, she knows he's already begun mulling over his options, including the possibility of a future suicide. Because of my clinical experience and outspoken opposition to legalized assisted suicide, she wondered if I thought the diagnosis of ALS might not be an exception. What should she tell her dad if he asked for help?

I shuddered to think of my friend's father watching Kevorkian take Thomas Youk's life. The real message of the broadcast was that being frail and too ill to take care of oneself is undignified and the best thing for the hopeless person and his or her family is a quick 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, there are worse ways to die. Pain, if it occurs, is typically mild and easily managed. Simply by refusing feeding tubes and mechanical ventilators, people with ALS can be confident of dying naturally and quite gently.

Of course, as with any incurable illness, an ALS patient's emotional suffering can be profound. In today's world, dying people too commonly feel isolated and outcast. If asked, they may tell you that being seriously ill is embarrassing. They are aware their appearance makes healthy people uncomfortable. I've heard many patients express feelings of shame over their physical dependence and guilt for being a drain on their families and on society.

Suffering of this nature is common and understandable. So too are ways of helping people work through these feelings. What the broadcast didn't show -- and what Kevorkian doesn't know -- is that Mr. Youk's life might have concluded differently. His story was not over until Jack Kevorkian hastily scrawled, "The End."

During my friend's call, as my mind raced in search of something to say, I thought of the care families give to infants and toddlers. Utterly helpless and incontinent, they are pampered by us, lovingly. When the ceaseless demands of child care leave us exhausted, we call on our family and friends for help.

I suggested she start with the obvious, telling her dad how much she loves him. I advised her to get her mom and her brothers together and say to him directly and plainly that he could never be undignified, that as awful as the news was, they would go through this ordeal together. I encouraged her to tell him that his care was a burden their family would willingly bear. I know them well enough to know that it's true -- as it is in most families. If his wife or child were the one who was ill, he would instinctively know that this is what families do. But the person who is ill needs explicitly to hear it.

It is in baby boomers' vital self-interest to transform cultural attitudes that underlie the suffering associated with illness and disability and to develop enlightened examples of caring for one another. Demographic trends are rapidly increasing the number of older, chronically infirm Americans in need of care. Simultaneously, the proportion of healthy adults available to look after family members is plummeting.

Millions of us seem destined to tumble into the gap between these trends and end up spending our last months warehoused in impersonal institutions. We urgently need to expand hospice care and create new modes of assisted aging and options for living and dying in place and in peace.

Kevorkian's act of civil disobedience is a violent assault on the heart of our cultural values. Killing Thomas Youk was also a serious crime. Oakland County Prosecutor David Gorcyca was right to bring charges.

If Jack Kevorkian carries out his threat to stop eating, he will be exercising a right that each of his "patients" has had. Ironically, in the process he will learn that there is no pain or physical distress associated with dying from malnutrition. I hope in his last days, whenever they may occur, Jack Kevorkian is comfortable 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, a consumer advocacy group to improve end-of-life care.

The Washington Post
Snuff Film
Ira R. Byock, M.D.
December 6, 1998.

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