End of life treatment: Teddy got ice cream

Barbara Moran’s story:

I dreamed about Teddy Kennedy.  He had died a few days earlier, and his memorial services had blanketed the Boston news.  I was jealous of Kennedy.  He spent the last days at home, smelling the salt of the ocean.  He ate bowls of butter crunch ice cream, watched James Bond movies and shared dinner with friends. 

     I’m sure Kennedy’s death had its share of horror, but that didn’t curb my envy.  Teddy got ice cream; my mom got a sterile sponge soaked in warm ginger ale.  Ted got the ocean; Mom got a gritty rooftop with a windsock.  Ted got his own bed and movies; Mom got the blinking lights of the I.C.U. and the stupid C.A.R.E. channel.  Her TV didn’t even have good reception.

     She did not regain consciousness, and died the next morning. I made peace with her death, but not with her dying.  She had four months of endless and pointless and painful procedures, and final days full of fear and despair.  Why is this medicine’s default death for so many people?

Ken's Advice:  Have the difficult conversation with your oldest relatives.  Start like this:  while eating ice cream with them, tell them what flavor you want in your last meal, tell them about Teddy’s butter crunch, and ask theirs. 

Read a story about a ”http://patientadvocare.blogspot.com/2007/01/art-buchwalds-choice.html”>contented end of life.

Thanks to science writer http://www.writtenbybarbaramoran.com/”>Barbara Moran for her story, reprinted from today’s New York Times article, “Not Just a Death, a System Failure.”

We have become the ones: The passing of Sen. Edward Kennedy

Poverty is the biggest risk factor for poor health: poor people live shorter lives, with more disease and disabilities, than the rest of us. So for those who are passionate about improving public health, the loss of Teddy Kennedy is a particularly great setback.

He was influential in passing the State Children's Health Insurance Program (SCHIP) and the Americans with Disabilities Act, and raising the minimum wage, to name only three examples of laws that brought about big public health gains.

His compassion, tenacity, and joy, and his record of achievement, make him my hero.

With his passing, as Caroline Kennedy Schlossberg said in her eulogy, "we have become the ones who have to do all the things he would have done -- for us, for each other and for our country."

Read a blog post from last year aboutTeddy Kennedy’s final year.

The Lion Still Roars: Teddy Kennedy & survival predictions

A year ago, Senator Teddy Kennedy's doctors told him he had 90 days to live. The senator pledged at the Democratic Convention in July that he would participate in Barack Obama's inauguration in January, and he did. We anticipate the arrival very soon of the Senate's universal health care bill, his long-time dream. "The lion still roars," as the Boston Herald's front-page headline of a story on Saturday by Hillary Chabot and Dave Wedge reports.

Doctors' predictions of how long a terminal patient has to live are often wrong. Indeed, these predictions only have "small associations" with survival times, according to a systematic review article that examined 24 studies. Dr. Antonio Vigano and his colleagues published their analysis of studies of terminal cancer patients in Palliative Medicine, a medical journal.

Advice to those hearing grim predictions of their survival time: Take it with a grain of salt, and savor Teddy Kennedy's example.

Read last year’s Teddy Kennedy story.

The furthest you could be from courageous: Attitudes toward one's own cancer

Although public figures like Teddy Kennedy promote enduring impressions of the stalwart, pumped-up spirit, Dr. Joseph Finns says patients themselves often describe a more nuanced, evolving journey.

When Robert Kosinski was told he had a tumor on top of his brain stem, entwined with his optic nerve, "Everything went dark, went blank," he recalled. "I was overwhelmed by the idea that I had a brain tumor stuck inside me. The train ride home lasted so long and I just kept wondering, 'How long do I have to live?'"

Faced with potentially harrowing repercussions from a biopsy, Robert, a husband and father in Jersey City, said he felt depressed and ultimately alone with his decisions.

He chose not to have the biopsy, and went through chemotherapy. He would endure a dozen blood transfusions. Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. "I never felt brave or courageous," he said. "I don't know what that means. I was scared. I was the furthest you could be from courageous."

That was 15 years ago. Now 61, he paints and attends a monthly support group, where he ascribes his odds-defying survival to luck and medical expertise, rather than personal will. "Some people in my group don't want to hear the upbeat scenario," he said. "The way they're coping is completely the opposite because they feel they may not make it."

Dr. Finns' advice to patients: There's no scripted way to handle this. Write your own script based on your own narrative.

Read a story about Teddy Kennedy’s brain cancer.

Thanks to Jan Hoffman for her source article in the June 1 issue of the NY Times.

Cancer is not a football game: Teddy Kennedy's brain cancer

The mantra of "fighting" cancer drives me nuts. The caring behind it is wonderful; the metaphor is not. Cancer is not a football game. The fighting metaphor is insidious because it implies that if you fight, you can "win." And if you don't fight hard enough, you are therefore a "loser."

The challenge for Teddy Kennedy, just diagnosed with brain cancer, is to figure out where the locus of our limited control lies. He can't change the fact of his diagnosis. But he can, and already has, chosen his doctors wisely. He is putting his resources now, appropriately, into learning about his cancer, what drives it, and what might slow it down. He may have to choose additional doctors, anywhere in the world. That's great. That's the stuff that really is under his control. As is choosing how to spend his time and energy. He is already doing all the right things.

So, I would change the mantra to "Breathe, Ted, breathe." Sail your boat. Kiss your wife and your kids. Trust your doctors. Keep doing the work you love.

Advice to cancer patients: Focus, like Teddy, on what is within your control.

Read last week’s post on Teddy.

Thanks to Judy Foreman for the source article in the May 27 issue of the Boston Globe.

Teddy Kennedy

A well-to-do man, Senator Edward Kennedy has long stood up for the underdog.

In response to the grim news this week of his terminal brain cancer, Sen. Kennedy has reached out to his family, and has even gone sailing near his beloved Cape Cod.

He lives his values, and fights for them. He consistently works with political opponents to find common ground, on immigration and education reform, to cite just two recent examples.

I hope that having fought hardest to expand healthcare over the years, that now, with the possibility of a Democratic president and Congress, he will live to see the passage of a universal healthcare bill in the next Congress.

For Jewish friends, who are encouraged to pray for an ailing person's health with the person's Hebrew name, I suggest as a Hebrew name, Thaddeus ben Shoshana (Ted, son of Rose).

Advice to people with terminal illnesses: Live your life with as much of Teddy's passion and humor as you can.

Read a story of zestful living in the “bonus round.”