Laurie Toby Edison

Photographer

“Absolute and Supreme Dignity”: the Case of Eluana Englaro

Laurie and Debbie say:

The government of Italy has narrowly escaped a constitutional crisis over the life and death of one woman–Eluana Englaro, who has been in a coma for seventeen years.

Doctors have confirmed that, after 17 years and with such catastrophic brain damage, Eluana will never regain consciousness or awareness. The anaesthetist caring for her, Professor Antonio de Monte, said: “Eluana died 17 years ago.”

As with Terri Schiavo in Florida in 2005, this has been a case where the next-of-kin and the medical establishment are arrayed against the government. In Terri Schiavo’s case, however, her parents wanted to have her kept alive, while her husband wanted to turn off the life support. In Eluana Englaro’s case, the Italian government seems to have intervened on their own. Englaro’s father and gravely ill mother spent ten years in court to win the right to reduce their daughter’s feeding-tube intake, and they finally won.

But that wasn’t the end. On Sunday, February 8,

… the country’s prime minister, Silvio Berlusconi, after consultation with the Vatican, has issued an emergency decree stating that food and water cannot be suspended for any patient depending upon them, reversing the earlier court ruling. On issuing the emergency decree, Berlusconi declared: “This is murder. I would be failing to rescue her. I’m not a Pontius Pilate.”

Justifying his campaign to save Englaro’s life, the prime minister added that, physically at least, she was “in the condition to have babies” …

Echidne of the Snakes points out clearly what Berlusconi is really saying:

Who’s gonna impregnate her? Some rapist? Because she can’t consent, you know. Or were you planning to use her as some kind of a surrogate mother?

Because we’re both science-fiction readers, visions of women’s bodies as baby machines dance grotesquely in both of our heads when we think about this. Clearly, Berlusconi doesn’t place a high value on a woman’s participation in a pregnancy, to say the least. And his advisors at the Vatican also have some values we’d call pretty twisted:

Pope Benedict indirectly referred to Englaro in a message delivered to mark the World Day of the Sick, stating that society had a duty to defend “the absolute and supreme dignity of every human being” even when “weak and shrouded in the mystery of suffering”.

“May the Lord welcome her and pardon those who brought her to this point,”.

We don’t think they mean whoever caused the car crash back in 1992. Do you?

Aside from everything we both believe about dignity in death and the absolute immorality of thinking of a woman in a coma as a baby-producer, there’s also a visual point to be made here. All the photographs of Englaro show a beautiful young woman, smiling joyously at the camera. This image makes it extremely difficult to think of her as brain-dead, as truly not there any more.

After seventeen years in a coma, she was almost certainly skeletally thin, with contracted muscles, not to mention hooked up to feeding and breathing tubes. We don’t see those pictures. A Google image search on “coma” produces many pictures of people who have recovered from comas, and only three of people in comas. While there is no direct link between the physical changes of a coma and the reality of brain death, nonetheless the realistic visuals can make it more possible to grapple with the truths reflected by brain function tests.

It’s completely understandable to want to remember people as happy, healthy, and smiling. It’s completely understandable to want to turn away from what people in long comas really look like. At the same time, these polarized national debates about the supreme dignity of life are vastly skewed by contrasting the words “brain dead” with images of vibrant life.

7 Responses to ““Absolute and Supreme Dignity”: the Case of Eluana Englaro”

  1. Lynne Murray Says:

    I have two personal experiences with relatives in a coma.

    The first was with my mother who spent 23 days in 1980 on a respirator after a stroke. The amount of care involved with a person on a respirator is daunting and the nurses who administered it ranged from the caring and realistic to the callous and realistic. One nurse asked me if I would like to learn how to suction the fluid out of her lungs. (I couldn’t handle that.) I believe that nurse was thinking about whether I would be capable of caring for my mother if she were to be sent home with impaired breathing. Another nurse treated my mother as if she were a piece of furniture and sat down to chat with me about her own woes dating a married man. I couldn’t resist saying that my mother wouldn’t want to hear this conversation. She was offended and and then I worried because I felt as if this was a hostage situation.

    As anyone who has been through this might imagine, there were many, many awful moments. It was a mercy for all of us when my mother died.

    My perception based on the hours I spent beside her is that she was stuck between life and death. Aside from brain damage from the time without oxygen before the paramedics arrived, she had emphysema and liver damage from alcoholism. She was not coming back, and I consider that she lasted as long as she did because she was an enormously strong person.

    But to this day I loathe the sound of a respirator.

    My other experience with a close relative in a coma was when my husband went into and out of a coma twice during March, April, and May of 1991 before dying in June. He was on a liver transplant list for awhile and the doctors at the VA were ready to put him back on it, but he had made a carefully considered decision not to be transplanted and made his wishes clear in a living will.

    Legally speaking the VA had to keep him until I told them not to resuscitate him. They sent him home a couple of times but he relapsed immediately when I tried to care for him at home.

    He was never on a respirator, but I refused to sign a DNR (do not rescussitate) order for 2 reasons–
    (1) the VA was walking distance from where we lived, so I could visit Charlie every day, the minute I signed a DNR order they would have shipped him off to a hospice across town which was much harder for me to reach, and
    (2) the resident doc in charge harassed me so hard that I dreaded seeing him. Finally he threw himself on my mercy and told me that he needed to clear his ward and having Charlie there was getting in the way of his paperwork. I had no mercy for that doctor. I started calling him “Dr. DNR” to the nurses and they had much worse names for him. But the rest of the staff treated Charlie well and when he went into his final coma some of them came up to intensive care to visit him.

    The intensive care doc very carefully told me that there was no coming back from this. This is a minefield for the physicians because families have so much trouble facing the reality of the situation and the hospitals are vulnerable to lawsuits. I did give her permission not to recussitate and as soon as they took him off all the extra support treatments in the intensive care, Charlie died peacefully while I was there with him.

    I have the deepest sympathy and empathy for anyone going through this. Just remembering it literally causes me to tremble. I cannot imagine enduring it year after year.

  2. Lisa Hirsch Says:

    The visual point that could be made about what people in a long-term coma look like cuts two ways. There are fully-alive, functioning-in-the-world disabled people who are very thin, have contracture, and/or use various medical devices to live. What message would be read in photos of a comatose person that some wouldn’t also try to make about some disabled people?

  3. Debbie Says:

    Lynne, thanks for sharing those stories. My only personal experience is with a friend who collapsed shortly after having an angioplasty and then lived unresponsively for over a year. Visiting him was hard, and he was neither my mother nor my husband. I respect what you’ve been through.

    Lisa, yes, absolutely. My real answer is that we should see those pictures in all kinds of contexts, from coma to functioning disabled person, and see them often enough to learn what we can each see in them. Laurie really pushed me to make sure that last piece didn’t make too many assumptions about what we see, but perhaps we didn’t go far enough. Nonetheless, I still think that the pictures of Eluana Englaro and Terri Schiavo and all that we generally do see make for a very one-sided visual experience.

  4. Laurie Toby Edison Says:

    Lynne,

    Thank you. I really valued hearing that.

    Lisa,

    I agree with Deb, and I also think you’re right. I think this is one of those times when there is more than one truth. It’s complicated and I need to think about this more.

  5. Elián Maricon Says:

    Berlusconi is a fascist, so this isn’t a huge surprise. However, it never occurred to me that photography could be a medium for conveying the ethical complexities of this particular issue. Heck, after looking at the Google images of people in comas, I am now convinced photography has the power to help put a decisive end to this debate once and for all.

    Thank you for this post. It gives one a lot of food for thought.

  6. Alan Bostick Says:

    The discussion of comatose women as baby factories reminds me of Pedro Almodovar’s film Talk to Her, a major plot point of which is that a man rapes and impregnates a comatose woman. The comatose women in the film (there are more than one) are Hollywood-beautiful, with no attempt to make them look as real people in coma do. The rapist in the film is a tragic figure, and the woman (who emerges from coma after the birth) is almost completely unaffected by the experience.

    (It’s the only Almodovar film I’ve seen, and I’m not in any hurry to see any of his others.)

  7. Lisa Hirsch Says:

    Almodovar can be wonderful. I loved both Volver and All About My Mother and recommend them both. Hated Women on the Verge of a Nervous Breakdown, however.

    Laurie and Deb, yes, this is a complicated issue.

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