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'The Empowered Patient' goes to Hollywood

By Elizabeth Cohen, CNN Senior Medical Correspondent
STORY HIGHLIGHTS
  • A number of movies depict empowered patients
  • "The King's Speech," depicts a milestone in patient empowerment
  • Basis for father in "Lorenzo's Oil" says many patients have written to thank him

(CNN) -- In the movie "The King's Speech," there is a pivotal scene where Elizabeth, the future queen, frustrated by the failures of doctors who were trying to treat her husband's stutter, ventures into the streets of London to the office of controversial speech therapist Lionel Logue. So unaccustomed to the outside world, Elizabeth doesn't even know how to properly work the elevator in Logue's building.

As Elizabeth, portrayed by actress Helena Bonham Carter, steps out of the elevator, the cameras capture what is perhaps a milestone in patient empowerment: a wife bravely defying the medical establishment and royal rules to get her husband the best medical care.

It's a point that hit Dave deBronkart, co-chairman of The Society for Participatory Medicine, over the head when he saw the movie.

"The queen, who of course wasn't the queen yet, had the good common sense to trust her instincts and not be limited to treatments that her gut said were no good, and that experience showed her were not doing any good," deBronkart says.

(Editor's note: King George VI's wife, played in the movie by Bonham Carter, was indeed Queen Elizabeth. She was crowned alongside her husband on May 12, 1937, at Westminster Abbey, and although she could not succeed him, her correct title was Queen Elizabeth. When her husband died and her daughter became the current Queen Elizabeth II, her title changed to Queen Elizabeth the Queen Mother. Informally, she was called the Queen Mum, which is how most Americans knew her. She died on March 30, 2002, at age 101.)

Elizabeth, deBronkart says, was truly an empowered patient.

"Here she goes to a neighborhood no one would expect her to go and get the care her family needed. She trusted her own instincts. I was so proud of her," he adds. "She didn't have any medical training but she made a difference in her husband's health. And you know what's really cool? She did it without the internet."

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"The King's Speech" is one of many movies with an empowered patient theme. In the 1997 film "As Good as It Gets," Helen Hunt's character decries her HMO as a "f------ bastard piece of sh--" that's done nothing to help her asthmatic son.

But she keeps close track of her son's symptoms, which comes in handy when a character played by Jack Nicholson finds a doctor who can help, much as the future queen found help for her husband.

In the 1992 movie, "Lorenzo's Oil," doctors tell Augusto and Michaela Odone that there is no hope for their son, Lorenzo, who has a rare disease. The Odones don't accept this, and come up with their own treatment, which saves their son.

These messages of medical empowerment have had an impact on audiences.

"I've received thousands and thousands of letters from people who were inspired by the movie," says Augusto Odone. "They each had their own diseases, but the common idea was the movie inspired them to be active, to be proactive, to find out more about their own diseases."

David Seidler hopes "The King's Speech" has the same effect on audiences. The movie's screenwriter, like King George VI, had a stutter, and like the king, most of the treatments didn't work. Then six years ago, the 73-year-old writer learned he had bladder cancer, and he unconventionally opted for alternative treatments with immune-boosting supplements along with surgery to remove the cancer, instead of having chemotherapy and his entire bladder removed. He's been cancer-free for more than five years.

"The Empowered Patient" spoke with Seidler about marbles in the mouth, finding Dr. Right, and why Elizabeth was way ahead of her time.

The Empowered Patient: Elizabeth was really quite the empowered patient.

Seidler: She was a wonderful advocate for her husband, and as a patient you really need to be an advocate, or to have someone advocate for you.

EP: Patient advocacy is a relatively new concept. Elizabeth was way ahead of her time.

Seidler: She was. Things were pretty archaic in the 1920s. The doctor was God and you listened to your doctor and you never questioned him.

EP: What made Elizabeth so different? Why did she question her husband's doctors, who were supposed to be the finest in England?

Seidler: She came from a very unique family. They were quite different from most establishment, upper-echelon families, who wanted to be courtiers, who wanted to be royalty. Her parents had no time for the court. They were very intelligent, modern people who wanted to raise normal children. They were affectionate people, which was almost unheard of in that class at that time. They didn't shuffle their children off to nannies. They were a close-knit, loving family. They played sports with their children, spent time with their children.

EP: What spurred her to go to Lionel Logue for help?

Seidler: She thought because of Bertie's stutter he wasn't going to be king. She thought they'd be left alone to a great degree. Then all of a sudden she realized they weren't going to get away with this, that he'd be called upon to speak, and it must have broken her heart to see his struggle.

There's footage of some of those speeches (where he stutters) and when Colin Firth saw it he actually wept and so did (director) Tom Hooper. Elizabeth had a will of iron. She was determined that her poor husband was not going to be humiliated by this stutter.

EP: The stuttering treatments George receives in the beginning of the movie -- did you have them, too?

Seidler: I had a lot of stuff done in England right after the war that was absolutely useless. I remember they told me to relax, and telling a kid who's wound up because he can't speak and has a stutter to relax is not actually terribly constructive.

Like George, I had marbles put in my mouth not in the '20s but in the late '40s when I was a kid. And like George, I was encouraged, almost ordered, by my doctor to start smoking at a very young age. I was smoking as young as 12, and by 14 I was a smoker. I was encouraged to do so because it was going to relax my throat and give me a lot of social confidence.

Like George, I paid the price. (George died at age 56 after suffering from a lung condition). About five or six years ago I was diagnosed with bladder cancer, which is directly related to smoking -- there's a direct correlation.

The only thing they did that really was helpful, and it's used today, and I use it in the film, is to be asked to read with earphones on and music piped in so you can't hear yourself, and you don't stutter. It is a parlor trick, but the first proof to the stutterer this is not inherent, this is not a permanent part of you, that yes your body is capable of speaking fluently if it doesn't hear itself.

That's a great sign of encouragement. In the later stages, when I had speech therapy in high school (in the United States), therapists were better trained, and there was one who was a particularly nice woman, and being nice and my liking her helped a great deal. This concept of friendship is what Logue was so brilliant about. When you read about him, what you read is that he was charismatic and full of confidence, not just in himself but in you.

He would say, "I can't fix your stutter, but you can, and I know you're going to do the work and you're going to be successful." When Bertie gives his final speech, Logue says to him, "Just say it to me as a friend," and that's the key. That was the key of the man's technique.

EP: Were the techniques Logue used on George ones you know he used, or were they based on techniques used on you as a child?

It's a combination. A lot of what you see on the screen were absolutely Logue's techniques, such as his use of tongue twisters. He loved tongue twisters and used them a lot. Making Bertie stand in front of a window and use vowel sounds for extended periods, Logue absolutely did that.

Having somebody, usually Elizabeth, (sit on him and) be raised and lowered to strengthen the diaphragm -- that was a physical technique he used. I have no absolute proof Logue used the trick with the earphones and music, but that was something that was used then and considered very effective.

Then comes the more interesting part, which was the talking cure, and I was able to prove that he used it in a very strange way. I have a rather elderly and eccentric uncle in England also named David, also a stutterer. (I stayed in his apartment during pre-production) and Uncle David became familiar with the project, and one day shortly before production started he said, "Is the chap in that film Australian?" and I said, "Yes, Uncle, you know that. You read the script."

And he said, "Was his name Logue?" and I said, "Yes, Uncle David," and he said, "I went to him for years. My father wanted me to go to the king's speech therapist." I said, "David, why didn't you tell me about this? What happened in the consultation room?" and he said, "I didn't tell you about it because it was all rubbish! He was an Australian gangster and all he wanted to do was talk to me about his Australian parents and his childhood and he wanted me to talk about mine."

EP: Were you an empowered patient when you had cancer?

Seidler: Oh yes. I felt it was terribly important to have a human being whom I could trust, a human being who could hear my point of view, which might not necessarily be the same point of view as another patient. Other patients might say, "There's a cancer in my bladder and the very thought appalls me and I want it out. Take my bladder out."

I was not a patient who was even vaguely interested in that. When the bladder is removed, most often there's some degree of incontinence and loss of sexual ability. For me, forsaking quality of life for quantity was not acceptable. I had my own agenda and I needed my own agenda to be understood. What I really liked about my doctor, and I thanked him profusely for it, was that he listened to me.

He listened to my concerns and my philosophy of life. That's wonderful and I really appreciated him. I regard him as my friend. His name is Dino DeConcini, and he's my friend.

EP: What do you want people to take away from this film about how to be a smart, empowered patient?

Seidler: That you're not a victim of the medical profession or your disease. That you're not trapped by it. To feel empowered that you're still in control of your own destiny. What I hate about some aspects of modern medicine is that the way patients are treated, you become part of a system. You lose your identity; you lose your personality.

You become a Social Security number, and they run you through a program. I think it is terribly important to know you have an honest, open, and trusting relationship with your physician, and I know in this day and age that's rather difficult since you see your doctor for 2½ minutes and then it's "Next!"

I used to love the old doctors who would come on house calls, which are a thing of the past, and tap the stomach and probe and feel and be hands-on and talk to you for 20 minutes to get a real sense of how you were feeling. It's an awfully good thing and made you feel better right away.