Readers share their own pain at facing end-of-life decisions for people they love, and reflect on the Terri Schiavo case.

By Salon Staff
Published March 25, 2005 8:24PM (EST)

[Read "Letting My Brother Die," by Lori Leibovich.]

I was profoundly moved by Lori Leibovich's article on Terri Schiavo. This tragic case has all of us thinking about things we'd prefer not to think about and some of us reliving periods in our life that feel raw when reexamined. The stories differ and yet the anguish of making these decisions is shared. Even, as in my case, when I had the benefit of knowing my father's wishes, and the legal tools needed to implement them, it is difficult and painful; I'm not sure that you're ever 100 percent sure you have done the "right" thing. Leibovich presents a very thoughtful, balanced and personally informed view of the Schiavo situation, something that has been lacking in all of the political and public maneuverings.

-- Susan Carter

Lori, you did the right thing. Just as Michael Schiavo is doing the right thing.

After four years of aggressive and futile therapy (including experimental brain-stimulation surgery), Terri's doctors told Michael Schiavo that her cerebral cortex died irrevocably when she had the heart attack that cut off the oxygen to her brain.

I know it's impossible not to worry, but I just want to say -- really and truly -- that you did the right thing, just like Michael Schiavo. Thank you for telling your story. I hope it helps you deal with the pain.

-- Tamara Baker

Thank you, Lori Leibovich, for sharing your life story with Salon readers. Your writing did more to clarify this issue than anything I have read or heard on this subject. I too had a sibling in a coma following a car accident. I remember the doctors talking about "pulling the plug" as my mother wept. Fortunately, my sister woke up from her coma after two months, but she still suffers a very serious closed head injury. She is truly disabled.

Our family was very fortunate to not have to make the choice your family did. I know that we probably would have made the same decision, even though we are Catholic, but it would have been a family decision with the assistance of clergy and without the president and his brother's involvement. It truly is unfortunate that the Republican-controlled Congress felt it could make political hay over such a tragic family situation.

If any good can come out of Terri's loss of privacy, it may be that we will all consider, plan and discuss how we want to be treated when we can't make our own medical decisions. My 16-year-old son told me his views on the subject as we sat on the couch watching television news. This is what all families need to discuss. Then, as families, we must respect a person's decision about medical treatment choices even if those choices may not be our own or seem immoral to us.

My fear is not that I will die too early after a devastating brain injury, but that I will be kept alive in a state of suspended animation when all realistic medical hope is gone. My fear is that a certain segment of our society will dictate that I can't make my own medical decisions, or that others I designate, such as my wife, can't make decisions for me when I am unable to do so. Terri's loss of privacy will help us, as a society, come to terms with this ethical dilemma. Hopefully, we as a society will honor the individual's decision, and will be allowed the privacy of our own inevitable death.

-- Alvin Boucher

Twenty years ago this month, my brilliant, funny 57-year-old father died from a particularly virulent form of brain cancer, after fighting the brave fight -- surgery, radiation, experimental chemo, physical therapy -- and lying in beds in hospitals much like the ones Lori Leibovich so beautifully described, while we, his family, wrestled with many, many of the same issues Ms. Leibovich laid out. She spoke my truth, too: I still wonder if we did enough, or too much, or ... what? If my father had managed through a miracle or extraordinary care or a glitch in his DNA to be one of those in the tiniest minority who survive this cancer for more than five years, if he had managed to live to see, or at least sense, his first grandchild, what would that life -- already bedridden, silent, prone to infection -- have looked like?

I don't know. But like Lori Leibovich I am glad that my family and I got to go through the mystery and the horror and, yes, the occasional joy in private. Great, great writing.

-- Martha Garvey

A persistent vegetative state is not a coma, in which the brain's neural activity is impaired or suppressed. PVS might more accurately be called a partial brain-death. Unlike total brain death, the stem remains intact so the automatic functions (breathing, eye-opening, basic heat-cold responses) still take place. However, the seat of the mind, the cortex, the frontal lobes, the memory and speech centers, are utterly destroyed. If I understand correctly, if you were to look into Terri's head, you would find a large mass of fluid where her upper brain should be.

In other words, expecting her to recover is the equivalent of expecting a man to spontaneously regenerate an arm. It will not happen.

As for whether or not you made the right decision, Ms. Leibovitch ... The big problem is, you initially describe a man who retained higher brain activity. That places the notion of "letting a dead person go" in a completely different context. I could happily conclude that you did right if you could demonstrate to me that your brother entered into a PVS. There are many documented instances of partial brain damage getting progressively worse, especially as a result of the kind of oxygen-depriving fever your brother suffered repeatedly. However, you did not make this clear. If not, you were making a decision which, absent knowledge of your brother's wishes, was simply not your decision to make. Life, painful as it gets, remains at least to some people infinitely preferable to death.

-- Michael B. English

Lori, thank you for the best article on the issue of shutting off life support when the patient is suffering and has no hope of recovery.

Terri's husband is her legal guardian, not the state, and certainly not her elderly parents. He says Terri told him she would not want to be artificially kept alive. That is good enough for me. Most of Terri's brain was destroyed 15 years ago. The MRI scans show there is no hope of recovery.

One of my dearest friends had the worst case of multiple sclerosis possible. Within seven years of diagnosis she was blind; within nine years she was utterly paralyzed and incontinent. She was also Catholic. At the age of 43, she decided she could not stand living like that anymore and decided to stop eating and drinking. She spoke with a priest privately first and asked him if God would forgive her. He (bless him) told her that of course He would. After several days she began slipping into unconsciousness and on the 10th day she quietly, peacefully breathed her last.

All of us who loved her miss her terribly, but understood her decision completely.

-- Craig Highberger

Salon Staff

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