March 30, 2005

Personhood Theory

One of the most troubling elements of the Terri Schiavo case is that many people, including the media, are not making clear distinctions. 

I hear this argument repeated over and over again that 'this is a private matter and the government should stay out.'    Had Terri made her wishes known in a written document, most likely the 'government would not be involved.  But she did not.  So all should understand.

• If you do not make a will, the 'government' will be involved and decide how your assets should be distributed and who will do the distributing.
• If you do not have a durable power of attorney, and are incapacitated, the 'government' will be involved to appoint someone to handle them.
• If you do not have a health care proxy or agent, the 'government' decides who is the person to make life and death decisions for you.

If you don't want the 'government' involved, you must prepare an estate plan and make your own decisions.

The people for sure  you don't want involved are the bioethicists cited in this piece "Human Non-Person" by Wesley Smith.  We are seeing the right to die being transformed into the right to euthanize.

I don't know when but at some point along the line, bioethicists, without any reference to what we Americans have always called, "unalienable rights and among them, life, liberty and the pursuit of happiness." began talking about "personhood".

Peter Singer of Princeton argues that unless an organism is self-aware over time, the entity in question is a non-person.  The British academic John Harris, the Sir David Alliance professor of bioethics at the University of Manchester, England, has defined a person as “a creature capable of valuing its own existence.” Other bioethicists argue that the basic threshold of personhood should include the capacity to experience desire. James Hughes, who is more explicitly radical than many bioethicists (or perhaps, just more candid), has gone so far as to assert that people like Terri are “sentient property.”

So who are the so-called human non-persons? All embryos and fetuses, to be sure. But many bioethicists also categorize newborn infants as human non-persons (although some bioethicists refer to healthy newborns as “potential persons”). So too are those with profound cognitive impairments such as Terri Schiavo and President Ronald Reagan during the latter stages of his Alzheimer’s disease.

Personhood theory would reduce some of us into killable and harvestable people. Harris wrote explicitly that killing human non-persons would be fine because “Non-persons or potential persons cannot be wronged” by being killed “because death does not deprive them of something they can value. If they cannot wish to live, they cannot have that wish frustrated by being killed.”

These distinctions are not based based on on any moral sense of the inherent dignity and worth of every individual  but on convenience.  What was inconceivable thirty years ago is reality today.  Once it's determined that you can kill newborn infants and those who lack self-awareness, what's to stop the killing of the profoundly retarded, then the minimally retarded, than the stupid.  Where do you draw the line?

"Personhood theory" ignores the development of moral philosophy of all the great wisdom traditions, all the great religions.  You don't have to be a believer to have faith that life itself as inherent value and meaning.  We are all connected in ways that are mysterious.  Before he was executed by the Gestapo,  Deitrich Bonhoeffer wrote, "Every... community must realize that not only do the weak need the strong, but also that the strong cannot exist without the weak. The elimination of the weak is the death of fellowship."

Maybe it is only the weak among us that brings out our humanity.  Or lack of it.  Think of Auschwitz and the last person condemned to starve to death, Father Kolbe.  He was known as the Saint of Auschwitz. and his  story is so moving and so important, it must be read. 

His heroism echoed through Auschwitz, in the words of one survivor, " bringing new life and strength...It was powerful shaft of light in the darkness of the camp."    There is no light in "personhood theory", only darkness.  They sound like Angels of Death.  The only people bringing light are those with a clear moral sense.  They are not all religious.  They all value life, even life crippled and disabled, and they have reason to fear the Angels of Death.

Personally, I'm with Eleanor Smith.

Demonstrating in her wheelchair with a "Feed Terri" sign in Florida this week, Eleanor Smith -- a self-described lesbian, liberal and agnostic -- told Reuters: "At this point I would rather have a right-wing Christian decide my fate than an ACLU member."
UPDATE: Denis Boyles writes about what a society is like that has lost its moral sense.
[W]e saw it in France, where all those enlightened rationalists live, less than two years ago when 15,000 weak and elderly men and women were left to die in a summer heat wave while government services shut down and their families all went on holiday. By the end of August 2003, 15,000 French people had died of simple neglect. That's the equivalent of five 9/11s in four months. One such event is all it took to transform America. In France, massive death received a massive shrug. I've reported this before, of course, but I still can't get over it: As a result of what happened during those awful weeks, nothing changed. The French press ignored the story almost entirely as it unfolded and only began reporting it in detail well after the fact. ...The last I read, more than a year and a half after the event there are still unidentified bodies of grandmothers and grandfathers stuffed into the morgues of Paris.
Posted by Jill Fallon at 9:53 AM | Permalink

Translucent Tombstones

These are quite beautiful.  Translucent tombstones from Lundgren Monuments,  They call them glass memorials.

You can break a Lundgren Monument with a sledgehammer, but that illuminating glass slab is as strong as stone and more durable than most. It is built to last over 2,000 years.

  Glass Tombstone
HT Boing Boing and Mark Frauenfelder

Posted by Jill Fallon at 3:23 AM | Permalink

Music stirred her damaged brain

A professor of neurology and neurophysiology at Harvard Medical School describes how a 32 year old woman, born with hydranencephaly, and thought to have been in a persistent vegetative state reacted with joy and delight to music.

I immediately brought her other doctors back into the room, where they began to interact with her in a totally different manner, in some cases holding her hand and trying to speak with her, and treating her more like a normally functioning human being. I was so emotionally moved by her struggle for human definition through the single modality of hearing that I went down to a local electronics shop and bought her an audio cassette player, and some modern and classical music. 

She continued to appear to enjoy the audio cassette player and her music until her death some years later. 

This patient demonstrated the dilemma we face in determining whether people in an apparent persistent vegetative state, who by all objective measure have little or no function in the cerebral hemispheres, have any residual human capacity that would persuade us to sustain their lives, even by artificial means. 

Her case was a reminder of how much we do not understand about the brain, and that even people in an apparent vegetative state may have ways of connecting to the world around them.
Posted by Jill Fallon at 1:55 AM | Permalink

Murder 'victim' alive and well

Most convicted murderers say they are innocent, but Ruben Dario Ovejero really was.  His sister spotted the victim alive and drunk walking the streets.  The victim told police he had moved to another town to try his luck and had no idea people thought he was dead.

Posted by Jill Fallon at 1:43 AM | Permalink

March 28, 2005

We need to know more

Finally, we're beginning to talk more about death and dying.  Not just what we know and don't, but how other people are handling some of the most difficult choices we will ever have to make.

Why we know painfully little about dying  in the Washington Post.

Just a few months ago, the National Institutes of Health, led by the National Institute of Nursing Research, held a conference in Bethesda to review the state of the science, with an eye toward giving more useful information to dying patients, their families and their health care providers. The result was mostly a numbing review of missing data. An independent panel at the conference concluded that there is a vast deficit of knowledge about end-of-life symptoms, caregiver burdens and what services should be available

. ...... 
The gaps in what we know are awesome. We don't have adequate studies on how to deliver effective pain relief to cancer patients or to relieve the struggle to breathe that accompanies some of the most terrible deaths. No data show how many family caregivers face bankruptcy or emotional crisis, or what kind of improvements would most effectively support them. 

1000 times a day in USA Today, 365,000 times a year.

Decisions about withdrawing treatment in hopeless situations occur more than 1,000 times a day in hospitals and nursing homes, according to The Hastings Center, a bioethics think tank. These choices are always heartbreaking, and conflict within families is common. Yet, the conflicts are usually resolved after families consult with physicians, clergy and others and slowly come to grips with the fact that their loved one won't recover.

Even as Doctors Say Enough, Families Fight to Prolong Life in the New York Times

For years, when families and hospitals fought over how to treat critically ill patients, families often pressed to let their loved ones die, while hospitals tried to keep them alive.  But in the last decade or so, things have changed. 

Now, doctors and ethicists say that when hospitals and families clash, conflicts often pit families who want to continue life support and aggressive medical care against doctors who believe it is time to stop.

  "The most common case that comes before the ethics committees," said Dr. John J. Paris, a bioethicist at Boston College, "are families now insisting on treatment that the doctors believe is unwarranted." 

Extraordinary medical advances have stoked the hopes of families. Also, more patients and families feel empowered to make medical decisions, and some are skeptical of doctors' interpretations or intentions.

We need to learn more

Posted by Jill Fallon at 10:02 AM | Permalink

March 26, 2005

There's more 'there' there.

A few years ago, unresponsive patients  were classified as comatose (eyes closed and responses limited to basic reflexes) or vegetative (eyes opening and closing in a cycle of sleeping and waking but without any sign of awareness).

That began to change when Danny Rios, a 24 year old with a severe brain injury, unable to speak or move his body, was taken to Sloan Kettering Institute on Manhattan's East Side.    Danny was placed in an MRI machine and a recording by his sister saying she was there and she loved him was played over his earphones.

The doctors didn't know what to expect when they looked at the images from the scan. They certainly did not expect to see Danny's brain to fire its neurons in a way virtually identical to a healthy subject.  Even the visual centers of his brain lit up as "if his sister's words awakened his mind's eye," in the words of researcher Joy Hirsch, an expert in brain imaging at Columbia University.  "There didn't seem to be anything missing, " said Nicholas Schiff, an expert in consciousness disorders at Weill Medical College of Cornell University.

Even with a brain injury,  neural networks can reorganize themselves into something closer to full consciousness.  One doctor said of Danny ""He's aware of himself, he's happy, but it took a lot of skill to see it. If he ended up in a nursing home and started doing things like this, no one would have noticed."

The whole fascinating story
- What if There is Something Going On in There by Carl Zimmer  - can be read in the New York Times magazine, September 28, 2003.  It can be accessed for free here.   

These researchers proposed a new category of consciousness  - the minimally conscious state -  in the Journal of Neurology  in 2002, a call endorsed by a string of medical societies and academies.

These researchers think it's likely that a vast number of people who might otherwise be classified as vegetative actually have hidden reserves of mental activity.   
It may well be that we have given up too soon on many people they think.

As we learn that different parts of the brain regenerate and reorganize even as other parts go missing, if we knew say, that someone who appears locked in a persistent vegetative state, understands who she is, appreciates music, recognizes people and feels emotion, then many of us have to reconsider what we want to do with the 100,000 - 300,000 people in a minimally conscious state. 

If thousands of brain-damaged people are treated as if they are unaware, but in fact hear and register what's going on but are unable to respond, how do we care for them?  Listen to what one doctor had to say in
Signs of Awareness Seen in Brain-Injured Patients, a New York Times article, sated February 8, 2005.  Free link here

This study gave me goose bumps, because it shows this possibility of this profound isolation, that these people are there, that they've been there all along, even though we've been treating them as if they're not," said Dr. Joseph Fins, chief of the medical ethics division of New York Presbyterian Hospital-Weill Cornell Medical Center. Dr. Fins was not involved in the study but collaborates with its authors on other projects.
A better understanding of brain patterns in minimally conscious patients should also help cut down on misdiagnosis by doctors, Dr. Fins said. He said one study had found that as many as 30 percent of patients identified as being unaware, in a persistently vegetative state, were not. They were minimally conscious.

The findings, if repeated in follow-up experiments, could have sweeping implications for how to care best for these patients. Some experts said the study, which appeared yesterday in the journal Neurology, could also have consequences for legal cases in which parties dispute the mental state of an unresponsive patient.

"The most consequential thing about this is that we have opened a door, we have found an objective voice for these patients, which tells us they have some cognitive ability in a way they cannot tell us themselves," Dr. Hirsch said.
The patients are, she added, "more human than we imagined in the past, and it is unconscionable not to aggressively pursue research efforts to evaluate them and develop therapeutic techniques."
Posted by Jill Fallon at 10:55 PM | Permalink

Disabled better off dead?

From an article from the Harvard Crimson by Joe Ford, a student with cerebral palsy, who supports, along with twenty major disability rights organizations,  Terri Schiavo's right to nutrition and hydration."Bigotry and the Murder of Terri Schiavo"

Polls show that most Americans believe that her death is a private matter and that her removal from a feeding tube—a low-tech, simple and inexpensive device used to feed many sick and disabled people—is a reasonable solution to the conflict between her husband and her parents over her right to life. 

The reason for this public support of removal from ordinary sustenance, I believe, is not that most people understand or care about Terri Schiavo. Like many others with disabilities, I believe that the American public, to one degree or another, holds that disabled people are better off dead.

To put it in a simpler way, many Americans are bigots.
One insidious form of this bias is to distinguish cognitively disabled persons from persons whose disabilities are “just” physical. Cognitively disabled people are shown a manifest lack of respect in daily life, as well.
The result of this disrespect is the devaluation of lives of people like Terri Schiavo. In the Schiavo case and others like it, non-disabled decision makers assert that the disabled person should die because he or she—ordinarily a person who had little or no experience with disability before acquiring one—“would not want to live like this.”
The mere assertion that disability (particularly cognitive disability, sometimes called “mental retardation”) is present seems to provide ample proof that death is desirable.  Essentially, then, we have arrived at the point where we starve people to death because he or she cannot communicate their experiences to us. What is this but sheer egotism? Regardless of one’s religious beliefs, this is obviously an attempt to play God.

Not Dead Yet, an organization of persons with disabilities who oppose assisted suicide and euthanasia, maintains that the starvation and dehydration of Terri Schiavo will put the lives of thousands of severely disabled children and adults at risk. (The organization takes its name from the scene in Monty Python and the Holy Grail in which a plague victim not dying fast enough is hit over the head and carted away after repeatedly insisting he is not dead yet.)

Not Dead Yet exposes important biases in the “right to die” movement, including the fact that as early as 1988, Jack Kevorkian advertised his intention of performing medical experimentation (“hitherto conducted on rats”) on living children with spina bifida, at the same time harvesting their organs for reuse. 
The point of this is not that I ended up at Harvard and Schiavo did not, as some people would undoubtedly conclude. The point is that society already believes to some degree that it is acceptable to murder disabled people.

As Schiavo starves to death, we are entering a world last encountered in Nazi Europe. Prior to the genocide of Jews, Gypsies, and Poles, the Nazis engaged in the mass murder of disabled children and adults, many of whom were taken from their families under the guise of receiving treatment for their disabling conditions. The Nazis believed that killing was the highest form of treatment for disability.  As the opening quote suggests, Nazi doctors believed, or claimed to believe, they were performing humanitarian acts.

Doctors were trained to believe that curing society required the elimination of individual patients. This sick twisting of medical ethics led to a sense of fulfillment of duty experienced by Nazi doctors, leading them to a conviction that they were relieving suffering. Not Dead Yet has uncovered the same perverse sense of duty in members of the Hemlock Society, now called End-of-Life Choices. (In 1997, the executive director of the Hemlock Society suggested that judicial review be used regularly “when it is necessary to hasten the death of an individual whether it be a demented parent, a suffering, severely disabled spouse or a child.” This illustrates that the “right to die” movement favors the imposition of death sentences on disabled people by means of the judicial branch.) 

For an overview of what “end-of-life choices” mean for Schiavo, I refer you to the Exit Protocol prepared for her in 2003 by her health care providers (available online at In the midst of her starvation, Terri will most likely be treated for “pain or discomfort” and nausea which may arise as the result of the supposedly humane process of bringing about her death. (Remember that Schiavo is not terminally ill.) She may be given morphine for respiratory distress and may experience seizures. This protocol confirms what we have learned from famines and death camps: death by starvation is a horrible death.  This apparently is what it means to have “rights” as a disabled person in America today.

Posted by Jill Fallon at 5:43 PM | Permalink

Lessons for Living from the Dying

Lessons for Living from the Dying by Jeanne McManus in the Washington Post

The first time I sat by the side of a deathbed and watched the life drain from a loved one, it changed me forever.
I continue to fine-tune my final scene. The more of life that I am given, the more I value it.  But the more I value it, the more I think about losing it and the more I try to direct the terms of my departure. I use flip and cynical comments to friends and family about what to do with me, most of my directives involving a wheelbarrow and a steep cliff.  On the more serious side, I use the wisdom of lawyers and estate planners to lock my wishes into place.
Time spent watching someone die is painful, agonizing and transforming.

Though it would be noble to say otherwise, it's not what you learn about death or about your friend or your parent or your sibling as the life drains from them. It's what you learn about you.

I would only add that failure to plan for the inevitable also says a lot about you.

Posted by Jill Fallon at 1:25 PM | Permalink

Dale Rules and ACLU converts

James Lileks goes shopping.

Then we went to Target to get the chairs for the gazebo. I paged a Sales Associate, or whatever they’re called, and up wheeled Dale.

He’s there every time I visit the store. I don’t know what his disability is. He’s the go-to guy at Target. Minor speech impairment; some muscular inabilities. But he has a walkie-talkie and a datapad tied into the Target mainframe and a gun that reads SKUs with a laser, so he can tell you whether the item’s in stock, order it up, and send a team of guys to drag it to your car. All with his one good hand. We are the Borg. Or will be, eventually; I can imagine a device that would fit on his head and let him do all these things with brainwaves and blinking.

Thirty years ago he would have been in a Home making wallets, wheeled out into the sun once a day, kept from sight. Now he rules this store.

Thirty years ago, some people would have said, 'I don't want to live like that.'  Today, they bring their fight to the ACLU.

Lucy Gwin in "Fighting for our Lives at the ACLU"

We would have been lucky to win one convert.  Turns out, we got all BUT one.  Oh, they kicked and screamed, but they got off the Right to Die bandwagon. 

What won the day for us may have been the same force that has defeated us: people's imaginings, as when they imagine a hard death. Now, suddenly, they imagined being disabled and proud but betrayed by the Right to Die.
Posted by Jill Fallon at 1:02 PM | Permalink

Most tsunami dead female

Far more women than men were killed by the Asian tsunami, in some areas four times as many, according to Oxfam.

This hugely disproportionate impact will have effects for generations to come.

Posted by Jill Fallon at 12:06 PM | Permalink

Due Process, Not Justice

I must say, I am confused about what's really true in the Terri Schiavo case.  And I am heartsick on the death watch of a woman whose wishes we do not know as she suffers and dies.

I've spent much time in the past few days reading court documents, conflicting medical opinions, charges and counter-charges and I will write more later.  I've not wanted to add much until I was clearer in my own thinking and in my own conclusions.   

In the end, it may be that Terri Schiavo got due process, she didn't get justice.

Note that I've already begun speaking of Terri in the past tense for she will surely die of dehydration.

She didn't receive a proper medical diagnosis.
Her guardian did not insure her proper care in the last few years.
We do not know what she would have wanted.
She was not terminal or dying prior to the removal of the feeding tube.

To quote Rabbi Marc Geller, "She is not at death's door. All this sound and fury is about cruelly bringing the door to her." 

It all seems to stem from a stipulation that the Schindlers made early on the case that Terri was in a persistent vegetative state.  Once that was stipulated and considered fact, no judge at the appellate level could reverse that. 

Once determined that she was in a persistent vegetative state, Michael Schiavo's memory that Terri "would not want to live like that" or "be a burden" became the clear and convincing evidence as to her wishes.  That too became a finding of fact that could not be reversed absent a legal mistake.

We all need food and water, and its supply through a feeding tube is easily done, unlike a respirator which breathes for a person.  Were a certain law not passed in Florida that said "artificially provided sustenance and hydration" is a life prolonging procedure, Terri would be receiving food today. 

So how was that law ever passed?
George Felos takes the case of Michael Schiavo in 1998.
George Felos files suit to withdraw food and water from Terr.i
George Felos files petition to introduce HB 2131 in 1999.
The law gets changed.
The Schiavo case gets heard. 
George Felos argues that Terri should die because she was being kept "artificially" alive.

The more I read about the incestuous goings on in the Pinellas Court System, at the Suncoast Hospice  and the terrible state of guardianship throughout the state of Florida, the more I think some enterprising reporter is going to have one hell of a best-seller in a couple of years.

Mickey Kaus asks P.S. Where do you sign a living will saying you want them to leave the tube in?

I don't do rants, I love reading them.  Here are two, make it three, incredible ones.
Ben Stein on Simply Terrifying
Rachel Lucas at Blue Eyed Infidel with Die already Vegetable and Batshit Insane

UPDATE: Moxie asks the question that struck me anew.  After the feeding tube was removed, why weren't her parents allowed to slake her thirst with water, or even food? 

Posted by Jill Fallon at 7:10 AM | Permalink

March 25, 2005

Living the Way Terri Was

Would you want to live the way Terri was? 

Amy Wellborn at Open Book responds,

I fully expect to.  Oh, not precisely as Terri does, but in some way, certainly. Unless I die a quick, sudden death, and who knows, even if I do, I will probably go through a period of physical and mental incapacitation, of suffering, of decline, of being bedridden and helpless, sick, dying and in pain"

So do I.  And yes, I would want to live, if only minimally conscious, until it is time for me to let go my earthly shell.  Until then:

I want to feel the sun on my face and cool breezes.
I want to smell lilacs and roses and freesia.
I want to drink cool water, preferably iced.
I want the pleasure of refreshing baths and clean linen sheets.
I want to listen to books on tape.
I want to hear symphonies, Gregorian chants and  other favorite music.
I want the delight of seeing friends and family that love me.
I want to hear them tell me old, familiar stories.
I want to have my arms and legs and back massaged with oils.
I want regular visits from my spiritual advisors to help me deal with my fears.
I want the grace of the sacraments.
I want medications to help me deal with pain.
I want to live as intensely as I can for my whole life, even if I can't speak.
I want to love and be loved.
I want to be treated with kindness.
I want to face death bravely, but not before my time.
I do not want to starve to death.

Posted by Jill Fallon at 7:16 PM | Permalink

March 21, 2005

The Twilight Zone

The final vote in the House was 203 yeah and 58 nay.  The familiar saying that hard cases make bad law may be true in Terri's case. 

While I am pleased that the President has signed the emergency legislation that allows a federal court to review Terri's case,  I don't think that an extraordinary appeal to Congress is the way to handle such cases. 

I  hope that this Congress seriously debates and considers how to provide the incapacitated with rights that insure the same due process if they have left no written directives that we accord convicted criminals.    "The facts of this case suggest that existing safeguards are dangerously inadequate" the editors of the National Review write. Democrat Michael Totten writes To Save or Not to Save and questions what the White House will do about people who are taken off life support because their families have run out of money.

I hope every adult appoints a health care proxy first, or at minimum, leaves advance medical directives.
There is no excuse for a competent adult American to leave their families clueless as to what to do.

Because absent a health care proxy, absent a living will, we have entered the twilight zone.

The debate on the right to live,  the right to die and the right to euthanize has begun. 

Whatever your opinion is on the Terri Schiavo case, there is no debate that the issue touches all of us.

No doubt we can keep bodies alive almost forever.  With oodles of money, Sunny von Bulow is still alive after 20 years in a coma.  While the battle for Terri raged on, a baby born with a fatal defect died after the removal of life support against the mother's wishes.  Does Spiro Nikolouzos meet the criteria for brain dead?  If his family can not find an institution who will take him, his life support will be cut off in 10 days.  In both cases, the hospitals were concerned about the rising costs of what they considered futile care. 

We're hearing about the rising costs of supporting aging boomers in their retirement.  What about the costs of keeping boomers alive through tax-supported Medicare?    The costs of end of life care can be extraordinary, a fact which prompted former Colorado Governor Richard Lamm to say in 1984 that "we have a duty to die" and get out of the way of younger generations.  He was often misquoted as saying the elderly have a duty to die. 

"I am fairly sure that the young generation and the baby boomers are going to demand more control over life and death," said Lamm. "I think they're going to demand physician-assisted suicide. We have some of these ethical issues that lie in our future, and we just have no idea of how tough they're going to be."

I don't have all the answers.    I do have some sense of how tough these issues are and will increasingly be.  I am concerned about the rights of the disabled and incapacitated.  I  think a lethal injection or increasing doses of morphine is far more humane than starving people to death.
I hope people think of the costs of futile care.  I  hope people think of themselves as part of a great continuum and face the prospect of death bravely.    I hope that people will decide for themselves and spare their families.

UPDATE: These women are yeoman -  doing the research and finding the facts and not just spouting opinions.  See What Bush Did in Texas by the Anchoress and Katherine Lopez at the Corner

Posted by Jill Fallon at 6:45 PM | Permalink

Better than a Living Will

I have written in the past about living wills Is the Living Will Dead? 

1.Most people don't really know what they want, apart from the general statement that they don't want to live like a vegetable.
2.People can't articulate what they want, apart from the general statement that they don't want to live like a vegetable.
3. Living wills  often can't be found. It's a long way from executing a living will to getting it on the hospital charts.

James Q. Wilson points out the problem in today's Wall Street Journal (subscription only)

[S]cholars have shown that we have greatly exaggerated the benefits of living wills. Studies by University of Michigan Professor Carl Schneider and others have shown that living wills rarely make any difference. People with them are likely to get exactly the same treatment as people without them, possibly because doctors and family members ignore the wills. And ignoring them is often the right thing to do because it is virtually impossible to write a living will that anticipates and makes decisions about all of the many, complicated, and hard to foresee illnesses you may face.

We both come to the same conclusion.  You are far better off with a health care proxy or durable power of attorney for health care that authorizes one person you know and trust to make the end-of-life decisions for you. 

The most difficult decision is who do you want to make those decisions.  It doesn't have to be a relative.  Pick one person and an alternate in case the person you've chosen can't serve.  You want to avoid family fights, so don't pick a committee.  It's simple, straightfoward and not expensive.  You don't have to anticipate every possible circumstance which you can't in event.  You just have to choose one person you trust. 

Get thee to thy lawyer.

Posted by Jill Fallon at 6:45 PM | Permalink

Hurrah for Digital Stories

I've long advocated digital stories as one way to create your personal legacy archives.

See how The Center for Digital Storytelling promotes storytelling as a way to create a living memory woven of a thousand stories.    Now has just begun a new way for grassroots media and storytellers to share their work and get noticed.  And there's an RSS feed.

HT to Stephen Harlow at Only Connect.

Posted by Jill Fallon at 4:16 PM | Permalink

Featured in Time Goes By

I am pleased, delighted and honored today to be featured today in one of my favorite blogs.

I'm a huge fan of Ronni Bennett and her blog Time Goes By.   She not only  addresses what it's really like to get older, she does so with passion and humor and sometimes with an insouciance that makes aging seem just another of life's adventures and mysteries and not something to be feared.

I love her small photo essays and I think her rule of telling a story in several sentences to illustrate photos is a wonderful way to tackle the overwhelming amount of photos we all have, choosing the best to create a personal legacy archives to leave behind as evidence of the lives we lived. 

She is certainly a pioneer, one of the first these days to write unflinchingly about aging.  She will not be the last on the aging beat and those that follow her have a high bar to meet.

Posted by Jill Fallon at 1:19 PM | Permalink

March 19, 2005

Removing Terri's feeding tube

Imagine Terri were your sister, your daughter, your aunt.  Could you bear it knowing that she would be starved to death over a period of two weeks.

When her attorney Barbara Weller told Terri what was happening, that the Judge had ordered the removal of her feeding tube,  "Terri cried and could not be quieted"

Peggy Noonan writes a special piece, If Terri Schiavo is killed, Republicans will pay a political price.

There is a passionate, highly motivated and sincere group of voters and activists who care deeply about whether Terri Schiavo is allowed to live. Their reasoning, ultimately, is this: Be on the side of life.
On the other side of this debate, one would assume there is an equally well organized and passionate group of organizations deeply committed to removing Terri Schiavo's feeding tube. But that's not true. There's just about no one on the other side. Or rather there is one person, a disaffected husband who insists Terri once told him she didn't want to be kept alive by extraordinary measures.

He has fought the battle to kill her with a determination that at this point seems not single-minded or passionate but strange. His former wife's parents and family are eager to care for her and do care for her, every day. He doesn't have to do a thing. His wife is not kept alive by extraordinary measures--she breathes on her own, is not on a respirator. All she needs to continue existing--and to continue being alive so that life can produce whatever miracle it may produce--is a feeding tube. 

But in the end, it comes down to this: Why kill her? What is gained? What is good about it?   

This case is being too quickly labeled as a conservative issue, which it is not.  It is a very difficult case that will impact all families who have a loved one who did not leave a written directive and who will die if a feeding tube is removed. 

Most families in these agonizing situations will grapple and find some sort of resolution but not without a lot of pain and agonizing.  Some families will be split irrevocably.     

Of course, the biggest lesson here is that every adult should have advance medical directives or a health care proxy.   

The most difficult area, the grey area is when families are split.  When one side wants to "do everything they can" and the other wants to "let them go" and there is no medical directive. 

Except in this case, "letting Terri go" requires her to be starved to death.  She is alive, conscious, interacts with her family and the people around her, requires no life support and is not brain dead in any way.    We don't allow dogs, convicted murderers or terrorists to be starved to death.  Why ever should we countenance starvation of an innocent woman. 

Katherine Lopez writes

A lot of folks who consider themselves "pro-life"--get worked up about abortion--want Schiavo protected. Those who are indifferent to or support legal abortion aren't particularly interested in hearing about the case--or assume her husband knows best. 

I think the key in this case are these fact questions. This woman has not gotten a fair shake in the judicial process. And medically, she may not have gotten what she could--like the chance at rehab. If more people knew some of these basic facts of unfairness, and could see some of these videos ..., I think this "issue" would transcend labels and things.
Posted by Jill Fallon at 4:58 AM | Permalink

March 18, 2005

Subpoenas for Terri Schiavo

Congress is taking action in the  case of Terri Schiavo. 

The Senate Health Committee has requested that Terri Schiavo and her husband, Michael, appear at an official committee hearing on March 28. Earlier Friday, a House committee was issuing congressional subpoenas to stop doctors from disconnecting the tube. 

Michael Schiavo has waged a yearslong court battle with his parents-in-law, contending his wife, who has been in a persistent vegetative state since 1990, would not want to live that way. 

Courts have cleared the way for him to remove her feeding tube as early as 1 p.m. Friday. The tube has been removed twice in the past and then reinserted as the battle continued. 

"It is a contempt of Congress to prevent or discourage someone from following the subpoena that's been issued," David Gibbs, the attorney for her parents, said. "What the U.S. Congress is saying is, 'We want to see Terri Schiavo.'" 

"The family is prayerfully excited about their daughter going before the United States Congress for the whole world to see how alive she is." 

He said that despite her brain damage, she would be able to travel. A statement from the office of House Majority Leader Bill Frist, R-Tenn., on Friday said the purpose of the hearing was to review health care policies and practices relevant to the care of non-ambulatory people.

If you want to learn about the background, read About Terri Schiavo: Shut Up.  For more about her medical condition, there's Starving for a Fair Diagnosis.  Don't bother going to the National Organization of Women because they don't even mention this celebrated case of a husband ordered by a state court  to begin starvation of his wife.  I can only guess that they do not want to be anywhere near arguments on the right of this woman to live.    Don't bother with the ACLU whose concern for disability rights and opposition to the death penalty apparently does not extend to those disabled, like Terri, who stand condemned to die by starvation and dehydration by judicial order. 

It's a rag tag bunch of bloggers at blogsforterri who have kept this story alive, created a network, made the latest information accessible, and finally the Congress takes note of the situation and acts.

UPDATE:  Charlotte Allen at the Independent Women's Forum really takes on NOW in Slo-Mo Peterson.
Katherine Lopez has never wavered in her support of Terri at The Corner

Posted by Jill Fallon at 9:45 PM | Permalink

March 16, 2005

Habeas Corpus Protection for Terri

You would think that having your own blog means that you can post your own comments.  But not so, it was rejected for "questionable content."!

So here is my fairly long response to "Buckhead" whose comments you can read at One Settlement, Another Judicial Homicide

I disagree.  We do not execute murderers without due process. What we are facing with Terri is judicial homicide without due process. I believe that the courts must allow due process when it comes to withholding food or water from a patient who is not terminal and who has not left a written directive. 17 doctors have filed affidavits saying that Terri is not even in a persistent vegetative state.  I do not believe that a conscious, but disabled woman should be allowed to starve to death, an action which amounts to torture.

Of course, people should have the right to refuse medical care. It's the family first or one member of that family and not the courts who decide to do when a medical directive is lacking.  Power has never been extended to courts to decide for themselves who lives and who dies. What they do is rule in favor, Here we have a spouse who has a severe conflict of interest and has not complied with state law regarding his guardianship of Terri.  When a guardian is a guardian only because of a default provision under state law, great care must be taken if there is an apparent conflict of interest especially when the rest of the family disagrees and has brought judicial proceedings contesting the default guardianship. 

Habeas corpus protection is guaranteed under the US constitution and there is a settled body of law that allows federal courts to review whether state court proceedings have violated a person’s
rights under the 14th amendment 
No State ...  shall deprive any person of life ... without due process of law...nor deny to any person within its jurisdiction the equal protection of the laws.  I believe that habeas corpus protection should be extended to those whose life support may be withdrawn pursuant to court order. Such an extension of habeas corpus protection will allow federal courts to review state family and probate court rulings where judges have extraordinary powers and discretion. I support the proposed Incapacitated Persons Legal Protection Act recently introduced in Congress.

There must be some collateral review of state court proceedings, particularly in cases like these where the judge’s conduct is so outrageous that people are now calling for his impeachment.  The realities of life in the 21st century are that such situations will arise often.  Terri Schiavo is a landmark case because she stands for all profoundly disabled people and for the millions of Americans who will get sick without ever executing an advance medical directive or appointing a health care agent.

Posted by Jill Fallon at 5:35 PM | Permalink

Death and Taxes

There's a fine new estate planning blog called Death and Taxes by Joel Schoenmeyer, a Chicago area attorney.  It may be the first one from what I can gather - apart from Legacy Matters of course, though that's not our principal focus, nor am I an estate planning attorney.   

I plead guilty to the "attorney" part, but I'm just another voice saying that Legacy Matters and what you leave behind is the evidence of the life you lived.  I want people to live fuller, richer lives and the way to do that is to realize that we all hang by a slender thread that could be cut at any time.  I believe that we all should  have a legacy plan so that we leave behind the gift of good records, the gift of good directions, the gift of family stories and the gift of ourself.  This is different from your traditional estate plan or your financial plan, but, in the end, may prove far more valuable to your family.

Joel and I share the same feeling, "the more information you leave for your loved ones, the better."    But he has better posts on matters you want to know about before you see your estate planning attorney or begin the administration of an estate.

How to make an estate plan that's virtually litigation-proof.
Why some family settlement agreements should be made sooner.
How to deal with parents who are gradually becoming less competent to deal with daily life.
What to do about insolvent estates
What about Taking Care of Toto.
Why a real estate trust may be advisable for public figures to preserve privacy


Posted by Jill Fallon at 5:09 PM | Permalink

In Remembrance of Fallen Soldiers

To honor service members killed in Afghanistan and Iraq, has launched "In Remembrance",

The site is accessible via, as well as through 193 of the company's newspaper affiliates, including the Chicago Sun-Times, The Florida Times-Union, and the Pittsburgh Post-Gazette. Already, more than 11,000 family members and friends have submitted entries to the more than 1,600 Guest Books has created for each fallen service member. 

"The response to the site -- and to the Guest Books in particular -- has been extraordinary," said President and CEO Stopher Bartol. "We are pleased to be able to lend our experience with online memorials to help people pay tribute to the soldiers who have given their lives." .
There is no charge to newspapers or the families of the deceased for the soldiers' site, and there is no advertising.
Hats off to the fallen soldiers for their sacrifices and their Great Legacies and to for this fine service.
Posted by Jill Fallon at 1:31 PM | Permalink

Motivating Procrastinating Clients

Financial Advisor News has a short article about Dealing with procrastinating clients.  Seems as if their high net worth clients put off making major financial decisions - especially when it comes to estate planning -  for as long as nine or ten years, a major problem for financial planners.

Motivating clients to do what everyone should do is their biggest challenge. So why do people procrastinate?  Yes, they're busy and yes they have limited time.  Who doesn't? 

Dealing with the fact of mortality is very difficult for some people.  For high net worth people ceding control of a business they started and grown can be "shocking" says Richard Peterson, a managing partner at Market Psychology Consulting in San Francisco.  Some people identify themselves with their wealth and the idea of giving it up can be akin to losing their identity.

Peterson puts his clients at ease by talking about their legacies, what they want to leave to the world.

Fear of death is so uncomfortable, many people can't even begin to think about what they will leave behind.  The only way to face fear is with courage. And courage means action of some sort.  The real antidote to fear is love.    The medieval mystic Meister Eickhart wrote a poem that included the thought, If you are afraid, imagine holding the hand of a small child and then you will become brave.  You protect your family and you protect the young.  People who love their families, who love themselves, have the self-regard and self-worth to plan for what is, after all, inevitable.

Financial advisors often talk only about the money that can be saved on taxes when they discuss estate planning, when that's not what people are concerned about. 

Unpleasant as the task may seem to some clients, neglecting to put one in place could end up being even worse. It could unintentionally hurt survivors financially and emotionally, costing millions of dollars in taxes, leaving assets tied up, putting a business at risk or inadvertently shortchanging some heirs.

People are concerned about their legacies, their reputation, their families.  No one really wants to leave this world leaving a mess behind and their families and employees angry and upset. Financial planners should be asking their procrastinating clients what really matters.  You do what really matters first.

Posted by Jill Fallon at 3:33 AM | Permalink

March 14, 2005

One Settlement, Another Judicial Homicide

MGH and the family of a woman come to an agreement to withdraw life support by June 30 from a woman paralyzed by Lou Gehrig's disease. 

The hospital and family have been fighting in court for more than two years over whether to keep Barbara Howe, 79, on a ventilator. Since she was diagnosed with Lou Gehrig's disease in 1991, Howe has gradually lost her ability to speak, gesture, and even blink her eyes, leaving her unable to communicate her wishes in any way. 

Mass. General doctors believe Howe is in pain and have pushed the family to allow the hospital to turn off her ventilator for two years. Howe's daughter, Carol Carvitt, is her healthcare proxy and has been unwilling to do so, saying her mother wanted aggressive treatment as long as she could enjoy her family.
In their statement, the two sides also tried to mend fences after two years of sometimes angry disagreement over Howe's care. The hospital ''acknowledges that the family has acted out of love and concern for their mother, and the family acknowledges that the hospital acted with similar concern for their patient and that Barbara would not have received better care anywhere else." 

The agreement appears to bring to a close a long and heart-wrenching situation, not only for Howe, but also for her family and caregivers. The case has attracted national media coverage, fueled arguments on websites, and highlighted the debate about how much care is appropriate for terminally ill patients. 

Physicians and lawyers who specialize in end-of-life issues say that often it is relatives and patients, not doctors, who want more aggressive care. In an article in the Journal of the American Medical Association five years ago, 48 percent of patients surveyed wanted all available treatments, no matter what the chance of recovery, while only 7 percent of physicians rated that important.

A sad case that illuminates the difficult questions we face as our loved ones sicken and only extraordinary means can keep them alive. 

I find this case quite different from Terri Schiavo who requires no medication, no extraordinary means to stay alive, only food and water.  Despite the desperate willingness of her family to care for her, Judge Greer has ordered that her husband Michael Schiavo remove her feeding tube on March 18 so that she will die.  Now we only have Michael's word that Terri expressed any wish to die if she were disabled, based on a comment Terri made while watching television, a  statement  that Michael remembered only after he won a malpractice award to care for her and which he stood to inherit in the event of her death. (Terrisfight has a complete timeline of the case.)  His conduct in every way has been despicable. See The Assault on Terri Schiavo

Michael Schiavo is her legal guardian under Florida law yet he has refused any rehabilitation treatment for Terri, refused to let her parents see her, refused to let a priest visit her, refuses to allow her to receive Holy Communion and spends the settlement money which was for her rehabilitation on his legal fees in seeking her death.  He refused to divorce her so she can live with her parents and refuses their request that she be buried in a Catholic ceremony, choosing instead to have her immediately cremated.

Despite apparent bias and conflict of interest, Judge Greer has ruled against the parents at every turn. 

U.S. Senator Mel Martinez from Florida has introduced the Incapacitated Person's Legal Protection Act to extend federal habeas corpus rights to incapacitated patients such as Terri Schiavo.  Such a law would extend to helpless people the same rights that convicted murderers on death row have. 

In Terri's case, there is much in controversy.  The Florida Department of Children and Families is conducting an investigation concerning some 30 allegations of abuse, neglect and exploitation and won't rule out taking Terri into protective custody.  Far better than any other media source, Blogs for Terri is doing a sterling job in keeping us informed of all that's happening,

The Vatican has spoken out via Bishop Elio Sgreccia, president of the Pontifical Academy for Life:

The bishop told Vatican Radio on Friday that withdrawing Schiavo's gastric tube would not be a matter of allowing her to die, but would "inflict death."  "The removal of the gastric tube used for nourishing her cannot be considered an 'extraordinary' measure or a therapeutic measure," he said. "It is an essential part of the way in which Mrs. Terri Schiavo is nourished and hydrated.

One woman who was thought to be in a persistent vegetative state was Kate Adamson, a mother of two, who suffered a double brain stroke and was in a coma for 70 days.  Doctors removed her feeding tube and for eight days she lay dying. Only when her doctors recognized her blinks as the way she was trying to communicate did they reinsert the feeding tube.  She described what it was like in a 2003 interview with Bill O'Reilly.

KATE ADAMSON, AUTHOR, KATE'S JOURNEY: TRIUMPH OVER ADVERSITY:  Yes, I do. I have a huge prospective on what Terri is going through.    O'REILLY: And what would that be?    ADAMSON: Well, especially after having gone through  this myself and the doctors assuming that I was in a vegetative state,  when, in fact, I was totally aware of what was going on around me.    O'REILLY: Could you hear -- could you hear people and  see them and all?    ADAMSON: I could see and hear everything going on around  me, and I had no way...    O'REILLY: Really?    ADAMSON: ... of communicating with anyone.  .........  O'REILLY: When they took the feeding tube out, what  went through your mind?    ADAMSON: When the feeding tube was turned off for eight  days, I was -- thought I was going insane. I was screaming out don't you  know I need to eat. And even up until that point, I had been having a  bagful of Ensure as my nourishment that was going through the feeding tube.  At that point, it sounded pretty good. I just wanted something. The fact  that I had nothing, the hunger pains overrode every thought I had.    O'REILLY: So you were feeling pain when they removed  your tube?    ADAMSON: Yes. Oh, absolutely. Absolutely. To say  that -- especially when Michael [Schiavo] on national TV had mentioned  last week that it's a pretty painless thing to have the feeding tube removed.  It is the exact opposite. It was sheer torture, Bill. 

I can not believe that this innocent woman will be starved to death.  Despite a concerted effort by Blogs for Terri and the parents themselves, generally it has been only certain conservative publications like the Weekly Standard and religious pro-life sites that keep this story alive.  Where are the feminists?  Where are the human rights activists?  Where are the death penalty opponents?  Where is the media?  This case has been consistently mischaracterized as a "right to die" case which it is not.  It is a "right to live" case even if disabled.  What we are seeing in this judicially-sanctioned homicide

Barbara Simpson writes

Terri Schiavo needs our help. This is not mercy killing. She is not a vegetable. She is not brain dead. She is a damaged human being, but she is human. If we ignore that or pretend that because she is "damaged," she has no value and it's OK to kill her, we are no better than the Nazis who picked and chose who would live or die.  We fought a world war to stop that mentality. We must not fall victim now.
Make no mistake, Terri Schiavo is a landmark case. Just how much power can probate and family court judges have? Who makes the decision to live or die? Where is justice found when a guardian who has severe conflicts of interest disagrees with the rest of the family? Where is justice found? Where do we draw the line? What protection is there for the severely disabled among us?
Posted by Jill Fallon at 4:50 PM | Permalink

March 10, 2005

Music to Die For

The Scotsman reports on a poll of 45,000 people across Europe on the music they want played at their funeral.

ITALIANS demand Mozart, Germans want heavy metal and Brits must have Robbie Williams.
Queen’s The Show Must Go On was voted No 1 funeral song by one in five Europeans, with Led Zeppelin’s Stairway to Heaven coming in second and AC/DC’s Highway to Hell third

In the UK, Robbie Williams’ Angels came out top, followed by the Frank Sinatra anthem My Way. Among other popular British choices were Bette Midler’s Wind Beneath My Wings as well as Amazing Grace. 
The European results were also broken down country by country. Norway’s favourites include Time to Say Goodbye by Andrea Bocelli and Viva Las Vegas by Elvis. The French top five was dominated by French music, while Mozart’s Requiem was the top choice in Italy. Spaniards and Finns prefer Albinoni’s mournful Adagio For Strings.

Viva Las Vegas at a funeral?

Posted by Jill Fallon at 2:23 PM | Permalink

March 9, 2005

Nobody noticed anything wrong

This is just too bizarre.

Mar 8, 3:21 PM (ET)

TOKYO (AP) - Police on Tuesday questioned three siblings after it was discovered they had been living with the decomposed corpse of their father for nearly a decade, an official said.

Police found the body of Kyujiro Kanaoka lying on a futon bed at the family's home in Itami city in Hyogo prefecture in western Japan, said a prefectural police spokesman, who declined to be identified.

Kanaoka's three elderly children, all in their 70s or older, told police they thought their father was still alive but that one of them recently had consulted a relative about the possibility that he might be dead, the spokesman said.

Police were investigating the cause of Kanaoka's death. Judging from the condition of his decomposed body, Kanaoka may have died as long as 10 years ago, the spokesman said.

Had he been alive, the man would be 107 years old. Hyogo prefecture had registered Kanaoka as its oldest living resident, public broadcaster NHK said.

Posted by Jill Fallon at 8:40 AM | Permalink

March 7, 2005

Knowing How to Die

Gerald Vanderleun has written a post on the Passion of the Pope that demands to be read. 

Here is a mere man refusing to just let go, declining to let a convenient and orderly succession proceed as would any sensible CEO, rejecting the advanced euthanasia formulas easily available throughout the western world, and refusing the cup that would take him down into a world without pain, a sleep without dreams, and a death in which the Vatican's silver hammer cannot be felt and the calling out of his name cannot be heard?

Why would anyone, many ask, suffer, when they could simply elect to die?
The Passion of the Pope is a living lesson that will teach many things to many millions of the faithful and the atheist alike in the days to come, not the least of which will be that the value of life in all conditions and all stages is not something that can be casually discarded or medicated or made easy simply because we can elect to end it.

I can add nothing that he didn't say better.

Posted by Jill Fallon at 8:53 PM | Permalink

Happy Birthday Dad

Eighteen year old Nick Brooks, with the help of a generous benefactor, has taken out a full page ad in today's New York Times to tell the story his father, Joe Brooks, never could and he didn't want to wait until his father died.

Seems that early on in his career as a composer and director, Joe Brooks read about Dr. Robert Good and what he was doing as head of the Memorial Sloan-Kettering Research Center.  Joe thought that if he could bring the greatest cancer researchers from around the world to work with Dr. Good, their interaction could produce ideas that would change the world for cancer patients.  Joe went to see Dr. Good who had the same idea, but didn't know how to raise the money since federal funding to bring strangers into the country seemed unlikely.

"In walked a disheveled young man with an offer to sponsor all these scientists for one year.  I didn't know whether to kiss him or to call security," said Good. 

Two weeks later, Joe Brooks gave Dr. Good a check for $2 million, $1 million from himself,  practically all he had at the time, and the balance money he raised. 

In conclusion, Nick writes:

My Dad has had four cardiac surgeries and has had two very near death experiences,  I decided I did not want this story to be told as his memorial service, whenever that time came.  He really has  made a profound difference in the world.  I wanted to tell it while he was still alive.  He is the most talented, most daring, most tenacious man I know.  He also gets me Knick tickets. 
I am proud to be your son.  Happy Birthday, Dad.
Your loving son, Nick.

I don't know which moves me more.  The foresight, generosity and humility of Joe Brooks or the teen-age son who shouts his love for his father from the pages of the New York Times.  Both are Great Legacies.

Posted by Jill Fallon at 8:40 PM | Permalink

March 6, 2005

Soup from scratch

She was a successful corporate warrior, yet at 48 she had yet to make a soup from scratch.  That's when she found her grandmother's legacy, a soup pot, a note taped under the lid, a recipe and a love from the past that filled a nagging emptiness.  Read A Good Day for Soup by Barbara Davey.

Think about the stories behind your possessions that you will one day pass on.  I love the idea of writing a note or a letter to tuck inside only to be discovered years later.    Will you pass on your stories as well as your stuff?    Think about if.  Your recipes may be more treasured than your china.

Posted by Jill Fallon at 11:00 PM | Permalink

Dougie by David Whyte


My uncle Dougie
was killed
on Sword Beach,
the 6th of June,
nineteen hundred
and forty four.

The cadence
of the date
like a slow chant
in my father's mind
round the one
central memory

Dougie taught
him how to swim
before he died.
Now I remember
my father's repeated
weekend need
for the ice cold waters
where he taught me
how to swim
and his fatherly
at the slowly
growing strokes
that kept his son
above water.

I could not know what
was being given then
not knowing
how as the years pass
we must always strike
boldly to save those close to us,
hold them
above the drowning water
with our words,
so they live again.

if not the man,
then the loved

From The House of Belonging, poems by David Whyte

Posted by Jill Fallon at 9:26 PM | Permalink

March 5, 2005

Six Months to Live

When people are in transition, stuck, not knowing what to do with their lives, life coaches ask questions such as

  • What would you do if you weren't afraid?
  • What would you do if time and money were not constraints?
  • What would you do if you only had a year to live?

They are looking for the key to unlock what is most meaningful to their clients, what makes them come most alive. Philosopher and theologian Harold Thurman Whitman said,

Don't ask yourself what the world needs - ask yourself what makes you come alive, and then go do it. Because what the world needs is people who have come alive.

When you are really facing death, doing what makes you come most alive becomes all you really want to do.

Last Wishes in this week's Time magazine features people whose final fulfillment comes in works that will outlive them.  Their great legacies not only enhance the world but inspire the people around them and alleviates the grief of their families.

Stephanie Williams, dying of breast cancer, finally wrote her book, Enter Sandman.

At the book's launch party three weeks before her death, Williams, thin and weak and wearing an outfit belonging to McGrath's 9-year-old daughter, told a crowd of friends and colleagues that writing the book was so rewarding that the past few months had been the best time of her life. "I feel like I've already died and gone to heaven," she said......"For a person dying so young, leaving something meaningful behind alleviated the anguish. This was her legacy." That legacy also helped family members cope. "It was easier to let go of her because we saw her living life to its fullest," says Faye.

Jessica Grace Wing, dying of colon cancer, composed an opera, Lost, an adaption of the Hansel and Gretel fairy tale. 

"Creating was her love," says her father Bill Wing, "and I think writing music kept her alive longer."  Her mother had a professional DVD made. "It connects me to her every time I watch it," she says.

Matthew Wiederkehr, dying of colorectal cancer, started a  foundation to make a difference in the lives of other cancer patients.

His mother said, "Of course, Matt was upset and angry about his illness. He was devastated. But being able to focus on this foundation helped channel those emotions in a positive direction."

Sometimes it's hard to remember that dying people are alive and living, perhaps more intensely than the people sitting around the cafeteria. 

Therese Rando, clinical director at the Institute for the Study and Treatment of Loss in Warwick, R.I.says in Last Wishes,  "Patients often begin doing things to give their lives purpose and meaning,  People want to know they can continue to exist in the world after they're dead. Who wants to be forgotten?"

That's why Legacy Matters.

Posted by Jill Fallon at 6:58 PM | Permalink

March 4, 2005

Artist, nazi hunter, master spy

The man who captured Adolf Eichmann died last week in New York. That's only part of his great legacy, much of which we will never know.

"I was determined to catch him because the eyes of six million are following me." 
"Uno momento senor (just a moment, sir)," he said to Eichmann as he walked down Garibaldi Street and then wrestled him into a ditch before grappling him into a car. Those were the only words he knew in Spanish reports the Jerusalem Post.

His friend Michael Leeden writes in a compelling piece with several great anecdotes.

Peter Malchin — Zvika to his friends — has left us..... He was an utterly extraordinary person who did extraordinary things that hardly anybody noticed because Zvika was the grand master at making sure nobody noticed him. Most of the time, nobody even saw him.

That is how he became the greatest undercover agent of his generation, and perhaps the greatest ever.
Posted by Jill Fallon at 4:13 PM | Permalink

March 3, 2005

Boffo Funeral

I like gossip columns.  From the National Enquirer to the Star which I read in the supermarket lines to Page Six in the New York Post which I read most days, I don't have to spend any money to indulge.  There, I've said it.  A totally useless weakness until today.

Here is the gossip doyenne Liz Smith on the funeral of Henry Grunwald which she calls a Funeral of Record.

But the funeral of Henry Grunwald, the one-time Time magazine honcho, at Temple Emanu-El on a snowy morning earlier this week was one that, had Variety been covering it, would have been labeled "Socko! Boffo!"

And if you feel my reaction is tasteless or offensive, then you didn't know the rare personality to whom New York's crème de la crème were saying farewell. He would have simply adored his own magnificent farewell. In fact, he left instructions on his computer, under "E" for "Exit," as to just what music he wanted.

What music that was! If you're the type who copies details about great parties or keeps books of divine recipes, etc., you might jot down the following for your own goodbye someday. If you do, you'll be in classy company. Henry requested and received — Haydn, "Opus 20" (Sun Quartets) . . . Mozart, "Voi che sapete" (Le Nozze Di Figaro) sung by
Jennifer Rivera . . . Mascagni, "Intermezzo" (Cavalleria Rusticana) . . . Verdi, "Addio del passato" (La Traviata), sung by Cheryl Evans . . . Giordano, "Amor ti vieta" (Fedora) . . . Puccini, "Che gelida manina," (La Boheme) . . . Gounod, "Avant de quitter ces lieux" (Faust), sung by Kyle Pfotmiller. Then add a rousing "Battle Hymn of the Republic" as the American flag-draped casket was taken from the temple.

Henry's honorary pallbearers were
Linda Fairstein, Vernon Jordan, Stefan Kanfer, Felix Rohatyn, Mike Wallace and Barbara Walters. His eulogists were a brilliant mixed bag, not one of whom repeated the other, each giving us an evocative remembrance of Henry — his son Peter Grunwald; his daughters Mandy Grunwald and Lisa Grunwald Adler; Henry Kissinger; Walter Isaacson, who had worked for Henry; Nora Ephron, who spoke delightfully of "Henry and women" on the direct orders of his widow. Mayor Bloomberg sat in the first row.

At the nearby Knickerbocker Club afterward, Henry's wife, the wonderful Louise, laid on a reception that would be listed in the local version of the "Almanach de Gotha," should such a high-toned thing still exist. I saw people I've never before seen out in the daylight. Henry's farewell drew them, one and all; nobody was invited, but everybody came. This funeral was a great tribute to a giant of a human being. "Best damned funeral I ever attended!" said one of the nation's top TV names as he left the building.
Posted by Jill Fallon at 3:12 PM | Permalink

Dancing with Death

This week's  Grand Rounds is hosted by Maria, an intern in a psychiatry residency program who publishes the blog Intueri, from the Latin, meaning to contemplate and in her case to contemplate musings, miracles, medicine and madness.  There I found Dr. Bob who writes about Dancing with Death in an eloquent and moving post.

A curious dance of denial often ensues between physician and family, as each, unwilling to face the unpleasantness of the inevitable, avoids the topic at all costs. The physician hides behind intellect, speaking of blood counts, medications, and ventilators, or at best tiptoeing around the core issue with sterile terms like "prognosis." Family members hesitate to ask questions whose answers they already know. Too rarely are the physician and family willing to place the subject squarely on the table, in all its ugliness and fearfulness. Decisions which need to be made are put off, unspoken and deferred. The clock ticks on, the meter is running, and only the outcome is not in doubt. 
Our discomfort with death is our confusion about life. Man is the only species cognizant of his coming demise -- who then, in the ultimate paradox, lives his entire life pretending it will not happen. Our Western culture, enriched with a wealth of distractions, allows us to pass our living years without preparing for the inevitable. When the time arrives, we use all the weapons at our disposal -- wealth, technology, information, law -- to resist the dragon. We drive it back for a time -- at enormous cost, personal, financial, physical and emotional. Death always wins -- always

This is so true.  Why people don't prepare for the inevitable, especially if they have young children or are in their middle age continues to surprise me.

We must learn how to die. And to learn how to die, we must learn how to live -- how to seek the transcendent, the power of love, and sacrifice, and giving which makes life rich and enduring. The selfish, the superficial, the transient all gratify for a time, but when this is all we possess, we grasp desperately to their threadbare fabric when beauty and health give way to weakness, fear and death. All great religions understand this: the meaning of life transcends life. In the Judeo-Christian view, life is an opportunity to draw ourselves and others closer to the light and goodness of God, with the promise of an even greater life and deeper relationship after death. Yet even for the agnostic or secular among us, service to others -- personal and social -- has the potential to endure long after us. None of us will be remembered for our desperate clinging to life in its waning days, but rather for the lives we touched, the world we made better when we lived.
I believe that the best way to live a full and deep life is to realize that death can come at any moment.
Posted by Jill Fallon at 2:57 PM | Permalink