Last October, in a one-hour special commentary on health care reform, Keith Olbermann discussed his father's illness in personal and graphic detail. Last night he provided an update that began: "Last Friday night my father asked me to kill him."

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Olbermann and his father have had conversations about end-of-life care. He's outraged at those who oppose this emotionally difficult but medically important event.

Four-month-old Baby Isaiah suffered irreversible brain damage at birth when his umbilical cord wrapped around his neck. Medical authorities recommended that the child be disconnected from the ventilator that keeps him alive. Isaiah's parents have sought to keep their child on life support through the legal system. See here and here for previous posts on Baby Isaiah.

A medical expert had agreed to give his opinion on the case on February 19. The upshot of last week's court proceedings, however, was another delay. The medical expect requested an additional MRI and more time to confer with specialists. A new court date has been set for March 11.

As I described in a previous post, the parents of Isaiah James May, who has been declared brain dead, are engaged in a legal battle to keep their son on life-support. At their last court appearance on January 27 they were granted an extension of their appeal. The next court date is set for February 19, when a medical expert will testify.

For updates on baby Isaiah, there is a Facebook page (available if you're a member of Facebook). The page mysteriously disappeared on Friday, but was restored on Sunday. Curious. The site includes three videos: A diaper change, baby Isaiah moving his leg, and a thank you from the parents. Although the parents find the movement of his leg an encouraging sign, I found that particular video - which shows the baby's feeble movement, as if in slow motion -- quite sad.

Isaiah James May was born last October in a small town (population 7,000) in Alberta, Canada. For Rebecka May, age 23, this was her first child. The pregnancy was normal, and both mother and child were healthy at the time of delivery.

Labor was difficult, however. It went on for 40 hours, including four hours of pushing. It's not clear why a Caesarian section was not performed. When baby Isaiah finally appeared, his umbilical cord was wrapped around his neck. This had deprived him of oxygen, and he suffered severe and irreversible brain damage.

The child was flown to a children's hospital in Edmonton, where he was placed on a ventilator. After evaluating Isaiah's condition, doctors recommended removing him from life support. His parents took the matter to court, and Isaiah remains on a ventilator and feeding tube, pending a legal decision.

Source: Sacramento for Democracy

Climate change

Copenhagen climate summit: Five possible scenarios for our future climate (The Guardian)
Concise summary of what we can expect for each increase of one degree Celcius (1.8 degrees Fahrenheit) in global temperature. Here are a few of the health implications.

1C: "Most of the world's corals will die, including the Great Barrier Reef. Glaciers that provide crops for 50m people with fresh water begin to melt and 300,000 people are affected every year by climate-related diseases such as malaria and diarrhoea."

2C: "The heatwaves seen in Europe during 2003, which killed tens of thousands of people, will come back every year. ... More than 60 million people, mainly in Africa, would be exposed to higher rates of malaria. Agricultural yields around the world will drop and half a billion people will be at greater risk of starvation. ... Glaciers all over the world will recede, reducing the fresh water supply for major cities including Los Angeles."

There's a long article in Sunday's New York Times on palliative sedation. I've also listed some older stories on the subject and an educational site.

Aging, end-of-life, and death

Source: The Why Files

Hard Choice for a Comfortable Death: Sedation, (The New York Times)
"Among those [end-of-life] choices is terminal sedation, a treatment that is already widely used, even as it vexes families and a profession whose paramount rule is to do no harm. Doctors who perform it say it is based on carefully thought-out ethical principles in which the goal is never to end someone's life, but only to make the patient more comfortable."

In the days before informed consent - when doctors knew best and it hadn't occurred to patients that they had rights - newborn babies with life-threatening birth defects were declared "stillborn." The motives were compassionate: Spare the parents an agonizing choice and a lifetime dedicated to full time care. This medical practice continued well into the post-World War II era.

Today, due to a combination of technological advances in medicine and the rise of bioethics, that's not what happens. Premature babies, for example, can be kept alive. Those first few months may be very difficult on the parents psychologically, and -- if they have good health insurance -- may cost a million dollars, but premature infants are saved all the time.

This past summer, thanks in large part to Sarah Palin, we were inundated with sound bites about death panels, pulling the plug on grandma, and saving the government money by dying a little sooner.

Palin's emotionally manipulative Facebook post appeared on August 7. "The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama's 'death panel' so his bureaucrats can decide, based on a subjective judgment of their 'level of productivity in society,' whether they are worthy of health care. Such a system is downright evil."

A great deal of misinformation was bandied about, and unnecessary fears were purposely inflamed to gain political advantage. There may be a silver lining to this cloud, however.

I collect stories of how the doctor/patient relationship has changed over the last half century. There's a new generation of doctors and patients who've only known the 12-minute office visit. For them, an extended, personal conversation between a patient and her physician is as antiquated as Marcus Welby, MD.

In the 12 to 15 minutes allotted to a patient, discussion is necessarily limited to the immediate symptoms. There's no time to understand the context in which the patient lives, works, and loves. For that type of holistic understanding patients seek out alternative medicine, which they do in increasing numbers. Now that anti-depressants are more cost-effective than talk therapy, conventional vs. alternative medicine is the new division of labor.

Some tributes to Senator Edward Kennedy and some honest recollections and assessments.

Ezra Klein in The Washington Post:

"Year after year, decade after decade, he labored to pass health-care reform. He sought deals with Republican presidents, with Democratic presidents, and even pursued the office himself. He tried to cut out the health-care industry and bring them to the table, to move forward on a bipartisan fashion and on a Democratic platform, to pass single-payer and to promote incrementalist approaches. The process wasn't the point. Nor were the people. Nor, even, was Ted Kennedy. Universal health care was the point. Helping the excluded, and the endangered, was the point.

Since shortly after Michael Jackson's death, the powerful anesthetic propofol has been suspected as the cause of death. Details of Jackson's final hours were released today by the Los Angeles coroner's office. Although the final injection of propofol may have been the immediate cause of death, it's only one small part of the larger and tragic picture.

There are good accounts of Jackson's final hours in the Los Angeles Times and at CNN.

The sequence was as follows:
10 mg of Valium at about 1:30 AM
2 mg Ativan (an anti-anxiety drug) at about 2 AM
2 mg Versed (a sedative) at about 3 AM
An additional 2 mg of Ativan at about 5 AM
An additional 2 mg of Versed at about 7:30 AM

Jackson still could not sleep and pleaded for the anesthetic propofol.

25 mg of propofol at about 10:40 AM.

Dr. Kevin Pho provides an analysis from a medical perspective.

Sharon Begley, science writer for Newsweek, has written one of the best articles I've seen so far on the acrimony of the current health care debate. It's not about the politics, which are unpredictable. It's an analysis of the underlying psychology, which will not easily be changed.

I recommend reading the entire article. Here are some highlights.

The idea of death panels gains ... credibility, ... "because many people are vaguely aware that end-of-life care is bankrupting Medicare and that at some point we have to figure out how to deal with that." ...

The power of "death panels" as a phrase and a scare tactic also works because Americans are deeply uncomfortable with death. We don't like to think about it or talk about it. ... As a result of that discomfort, reminding people of death sends them off the deep end, into the part of the neuronal pool where reason cowers behind existential terror.

Even though I've been writing about Arash Hejazi (here and here), the doctor seen in the video of Neda Agha-Soltan's death in Iran, I have to admit I still haven't seen the video. I realized early on that I didn't want to watch someone die a tragic and violent death. I didn't want to see her alive and then see her dead. Every second in real time. I don't need to watch the video to understand why Soltan's death is so symbolic or why the widespread viewing of it is significant.

It could have been 20 years ago that I watched a PBS broadcast about a women who prepared to kill herself. She filmed the entire sequence: Her thoughts, the elaborate preparations, and the actual death. What struck me was not that I watched someone die, but that the event was filmed and presented for public consumption. I believe assisted suicide can be a rational decision when there is incurable, intolerable pain. I don't find witnessing an actual death in a documentary helpful in thinking about this issue.

Even though I've been writing about Arash Hejazi (here and here), the doctor seen in the video of Neda Agha-Soltan's death in Iran, I have to admit I still haven't seen the video. I realized early on that I didn't want to watch someone die a tragic and violent death. I didn't want to see her alive and then see her dead. Every second in real time. I don't need to watch the video to understand why Soltan's death is so symbolic or why the widespread viewing of it is significant.

It could have been 20 years ago that I watched a PBS broadcast about a women who prepared to kill herself. She filmed the entire sequence: Her thoughts, the elaborate preparations, and the actual death. What struck me was not that I watched someone die, but that the event was filmed and presented for public consumption. I believe assisted suicide can be a rational decision when there is incurable, intolerable pain. I don't find witnessing an actual death in a documentary helpful in thinking about this issue.

Michael Jackson. August 29, 1958 - June 25, 2009

One of life's most tragic events is the death of child. Whether a child falls unexpectedly and hits his head or suffers from a disorder that progresses inevitably towards the premature end of a life - one cannot measure and compare such experiences.

We sometimes think of today's biomedicine as an impersonal, corporate machine that prolongs the life of the terminally ill simply because it can. We criticize -- I've criticized -- maintaining the life of an elderly patient in an ultramodern ICU until she dies a lonely and undignified death. When the patient is a child, the decision to let go must be even more difficult for both family and physicians.

The Journal of the American Medical Association (JAMA) publishes a weekly feature where physicians (and others) can write about their more personal experience of medicine. In a recent essay, a doctor described how she was ready to let go of a young man's life. The father was not. Eventually the doctor came to understand the father's feelings.

The patient, Jason (not his real name), had suffered from Wilms' tumor or nephroblastoma, a malignant tumor of the kidneys that occurs primarily in children. It's a rare disease: Only 500 cases are diagnosed in the US each year. Jason had made it through his first year of college, but blood clots from his heart had traveled to his brain. After a series of strokes, his cognitive function was minimal.

It's Thanksgiving and I'm feeling 'Ich habe genug' (I have enough). I'd like to share some poetry, music, and a film while continuing the 'death' theme of my last blog post.

First the film, Wit, starring Emma Thompson and directed by Mike Nichols. It's the story of Vivian, a woman with ovarian cancer who spends the end of her life in a hospital. Talk about aggressive treatment of the terminally ill. She's basically a guinea pig for an experimental drug that has no chance of saving her life. The young doctor who oversees her treatment will get a publication out of the case. He's a resident planning a career in research and has no interest in ever seeing patients again. He's only there because it's one of the requirements on the road to becoming an MD.

Wit is based on a Pulitzer Prize-winning play. Very minimal. Lots of monologue. Vivian was a professor of English literature and quotes the metaphysical poet John Donne (of "Death be not proud" fame) throughout the film. The contrast between the poetry and the setting is beautifully done. Donne had much to say about death, but he lived in an era when death had a different meaning. Or more precisely, when death had a meaning.

Sounds a bit gloomy, I know, but it's an excellent film. Watch it with a friend, if you can. It's very thought provoking. This is exactly the way we don't want to die. The more we're aware of what we don't want, the more we'll be motivated to change the way things are.

Next, a poem by Jacques Prevert, "Pater Noster." The poem received some publicity when Meadow Soprano read the first few lines to her Level 1 ICU-docked Dad: "Our father, which art in heaven, stay there. And we shall stay on earth, which is sometimes so pretty."

Here is the French version. And here's an English translation.

Clifford Hospital, Guangzhou (Canton), China

Philip Larkin's poem "The Building" is about a hospital. Here's the complete poem, and here are the last few lines:

All know they are going to die.
Not yet, perhaps not here, but in the end,
And somewhere like this. That is what it means,
This clean-sliced cliff; a struggle to transcend
The thought of dying, for unless its powers
Outbuild cathedrals nothing contravenes
The coming dark, though crowds each evening try

With wasteful, weak, propitiatory flowers.

I've been partial to Larkin ever since I read "This be the verse" at an impressionable age.

And continuing the theme of Genug, here's the Bach Cantata, "Ich habe genug".

This may seem like a 'Debbie downer' subject to bring up right before a holiday, but I'd like to say a few words about death. Death is the elephant in the room whenever we talk about health, medicine, or healthcare. When we 'eat right' and exercise, we engage in a modern ritual that we hope will prevent something that's 100 percent certain. Even the transhumanists, who hope to prolong life indefinitely, admit that eventually everyone will succumb to an übervirus or accidentally cross the path of a flying car.

The high tech flash of post-industrial medicine encourages this illusion, and that creates interesting problems. How do you allow someone to die a dignified and peaceful death when the focus of medicine is to keep everyone alive, even the terminally ill? What does it mean to die when modern medicine can keep us technically 'alive'? Claus von Bulow's wife Sunny has been in a coma for 28 years. It may seem crass to think about economics when we're talking about a human life, but a high tech death in an ICU has implications for the high cost of healthcare.

The natural death: Genug Syndrome or Zahl Kam Rauf

It's now rare to die of 'natural' causes in one's own home. There are small pockets of resistance, however. A recent essay in JAMA called "Genug Syndrome" told the story of an elderly woman named Lisa. She had been cared for at home for eight years and died peacefully, sitting in her candy-apple-red wheelchair, surrounded by family and friends. When it came time to fill out the death certificate, the family decided she had died of genug syndrome. Genug is Yiddish for "Enough!" or "Enough, already!" When someone inquired about the actual cause of death, Lisa's daughter objected. She didn't want her mother's life summed up by a medical diagnosis. The doctor agreed:

Should I mar the identity of this complex person with such a rich life and legacy by reducing her to a medical diagnosis at the end - when, really, it was just genug? When end-of-life care transcends the medical model to be truly a natural part of life, as this family had achieved, listing a medical-model cause of death seemed incongruent with her whole life and spirit.

The bureaucracy is stacked against doctors who resist filling out death certificates with a 'medical-model' cause of death. Fortunately this particular doctor (Jennifer Soyke) practiced in Oregon, a state that legalized euthanasia in 1994. She mentions a recent Oregon obituary that lists the cause of death as "the common form of Zahl Kam Rauf." 'Zahl kam rauf' literally means 'number came up.'