Jennifer Haberkorn is a health care reporter forPOLITICO Pro.

It was June 2001 when “Jane Dee” checked into Massachusetts General Hospital at her own insistence. The 64-year-old woman, who had suffered from severe depression for 17 years, wanted to be hospitalized to ensure she didn’t drink away her fear of what was planned for the next day.

When she awoke, she couldn’t help but think about One Flew Over the Cuckoo’s Nest. The Jack Nicholson movie and its gruesome depictions of electroconvulsive therapy ran through her mind as she walked to the basement procedure room to get her own, far more modern version of “shock” therapy in hopes of driving away the depression.


Almost immediately, she felt better—lighter, happier. She and her husband were able to celebrate their 38th wedding anniversary that night in awe of the complete turnaround.

Jane Dee, though, was no ordinary patient. She had tried—sometimes unsuccessfully—to keep her history of depression and drug and alcohol abuse out of the public eye during her husband’s political career. Now that her husband was out of office, she had an even bigger secret: shock therapy.

The couple quickly found that electroconvulsive therapy was massively successful at treating severe depression. But it suffered a huge public relations problem: It developed a horrible reputation in the middle of the 20th century when it was used without today’s patient safety protections, it was stigmatized through pop culture and there was no one willing to talk publicly about its effectiveness.

Within a few years of that first treatment, Kitty Dukakis—the wife of 1988 Democratic presidential nominee Michael Dukakis—decided she didn’t want to be anonymous anymore. Together, Michael and Kitty decided that they had a platform to advocate a medical treatment that, despite its massive image problem, is widely credited with saving lives and setting patients once crippled with depression on the road to happy and productive futures.

In the process, the Dukakises have found themselves to be the unexpected champions of one of the most controversial and misunderstood—but highly effective—procedures in modern medicine.

***

Throughout Michael’s nearly three decades in elected office, he was the star of the couple. He served a record three terms as governor of the commonwealth of Massachusetts; his one run for the presidency still haunts the Democratic Party as a winnable failure.

But now, nearly 25 years after he finished his third term as governor, it is Kitty who is drawing the crowds, Michael boasts in an interview with POLITICO in his office at Northeastern University, where he teaches political science. He says he was struck by the role reversal at a fundraising dinner for a Cambridge health care association in April, where they were both given an award for their contributions to universal access to health care and reducing the stigma of mental illness.

“It was a big crowd; they raised a lot of money and Kitty got a standing ovation for about five minutes,” he explains during an interview this summer in his office, where he sits under a sign advocating for his Massachusetts universal health care bill, which he signed in 1988—decades before Congressional Democrats passed the Affordable Care Act in 2010. “Not me—I got polite applause. I’m serious. It’s pretty extraordinary.”

Kitty does have quite a story to tell. It was during Kitty’s junior year of college, years before she met Michael, that she began sneaking her mother’s “diet pills”—a 1950s era euphemism for amphetamines, or speed.

That grew into a two-decade habit that she kept secret through a short-lived first marriage, through meeting and marrying Michael in 1963, through the pregnancies of three children and through four miscarriages. It wasn’t until 1974—shortly before Michael won his first election as governor of Massachusetts—that he stumbled upon the pills and asked her to stop.

She did stop for a little while, but the addiction quickly and quietly returned. It wasn’t until a successful visit to rehab eight years later that she finally kicked the pill habit.

But with the pills gone, alcohol slowly began to take their place. That’s not uncommon; mental health experts say many patients with depression subconsciously self-medicate with drugs and alcohol, just like Kitty did.

Throughout her husband’s governorship, she drank but it was rarely problematic. When his 1988 presidential campaign got serious, she turned to alcohol to deal with the pressures of the race. The mounting demands of a campaign and the fear of actually becoming First Lady hit her shortly before the pivotal New Hampshire primary. “I was petrified at the prospect of his winning the Democratic nomination, not to mention the presidency,” she wrote in her 2006 book. She cancelled two trips before the Ohio primary and said she had the flu. Sitting in her house alone, she drank enough to send herself into a stupor.

Kitty Dukakis, here in an empty airport in 1988, has a new campaign she's fighting for. | Getty

She bounced back for the general election, but alcohol was a constant companion on the campaign trail. Her staff was instructed to leave vodka in her hotel room each night after a day of campaigning. She set up a routine: down a single shot, close the bottle and go to bed.

That measure of control vanished after the crushing, lopsided election defeat. Then-Vice President George H.W. Bush won 40 states, having convinced voters that Dukakis was a dispassionate, wonky academic. Two days after Election Day, Michael went back to the Massachusetts statehouse to resume his duties as governor. But Kitty, with her packed campaign scheduled done, began binge drinking. She drank every day, a little more each day.

More than 25 years later, Michael still remembers the day he came home, searched through their Brookline home and couldn’t find her. “Finally, I went up to the third floor and I saw what looked like was a bunch of rags on the floor,” he says now. “It was my wife, completely passed out on the third floor. How she got up there?—Jesus, it was horrible.”

By the one-year anniversary of the failed election, with all of the drinking alcohol gone from the house, Kitty downed almost anything in liquid form that might relieve her of consciousness: Vanilla extract. Hair spray. Rubbing alcohol.

And then, “I spotted a bottle with ‘alcohol’ written near the top,” she recounted in her 2006 book. “‘Rubbing’ was right above it, and I saw that, too. I knew rubbing alcohol was different from the drinking kind, but I didn’t know how toxic it was. I had no intent to kill myself, I just need to sleep for a while. I took a small gulp.”

She was hospitalized several times and tried more rehabilitation clinics. She tried to check in anonymously—one time using the name of former First Lady Abigail Adams—but it didn’t always work. In February of 1989, just months after the presidential election, she was outed by another patient, forcing Michael to do a press conference to announce that she was in an alcohol treatment program—an announcement that shocked most Americans who had seen her campaigning next to her husband only months prior.

But ultimately, no rehabilitation program was able to counter the alcohol addiction and depression.

The only thing that worked was electroconvulsive therapy.

A doctor had mentioned ECT to Kitty and Michael years prior, but they had been skeptical. Michael’s brother had undergone electroconvulsive therapy in the 1950s, when it lacked the patient safety protocols that exist today.

But by 2001, Kitty’s depression was so bad that they didn’t know what else to do. Like clockwork, the depression rolled in like a batch of dark, menacing clouds every eight or nine months and lasted another three or four. Rehab didn’t work. Talk therapy was unsuccessful. She tried every pill on the market; they either didn’t work or caused too many side effects.

When she underwent her first treatment, the turnaround was immediate—far faster than most people see results. While Michael drove her home, she remembered that it was their anniversary, and announced that she was in the mood to celebrate. “She said, ‘Let’s go to dinner tonight,’” Michael recalls. “I almost went off the road. She was a basket case the night before.”

An electroconvulsive therapy treatment is supposed to “reset” the brain to disrupt the patient’s depression—kind of like rebooting a computer. With the patient under anesthesia, a small current of electricity is used to spark a grand mal seizure. Dr. Charles Welch, one of the nation’s top experts on ECT and Kitty’s psychiatrist, explains that the resulting seizure is the neurological equivalent of flicking on and off every light bulb in New York City three times in one second—a massive event that is supposed to jolt the brain back into its “normal” state.

Physicians know that the seizure is the key to getting rid of the depression. But they can’t explain how a seizure does it—or how to obtain the same results without the seizure. “It really is the central question in ECT,” Welch says. “It’s so simple on the face of it and so difficult to explain why [it works].”

A patient like Kitty getting ECT today often does it in an outpatient hospital visit that typically lasts a little more than two hours. (Most of that time is spent recovering from the anesthesia.)

After the anesthetic is administered, electrodes are placed on the patient’s head—traditionally on opposite sides of the head, but more often now, an electrode is instead placed on the top and right side, where there is lower risk of memory loss. A physician then sends an electrical current through the electrodes. The amount of electricity varies by patient but it tops out in the United States at 100 joules—or enough power to light a 100-watt lightbulb for one second. Welch said that he’s often using about one-third of that amount. For comparison, that’s less than the 150 or more joules that’s typically used on the chest to resuscitate an adult that’s gone into cardiovascular arrest.

About 80 percent of patients who do a series of ECT—which could range from six to 12 treatments given over a series of weeks—go into remission. It has the highest remission rate of any of the treatments that exist for depression, says Dr. Sarah Lisanby, the chair of the psychiatry and behavioral sciences department at the Duke University School of Medicine.

Like other chronic medical conditions, that remission is not often permanent. Patients typically go on anti-depressant medication after treatment and have follow up ECT treatments when signs of depression return. Lisanby and other psychiatrists say that the biggest challenge facing ECT now is figuring out how to make that remission more permanent.

Kitty and Michael are still active in politics, particularly in Massachusetts, where they campaigned for Elizabeth Warren in 2012. | Getty

“That’s our goal: not just remission, but return to living a full life,” she said.

***



While her husband was in public office, the almost-First Lady was reluctant to share her battle with substance abuse and depression. But in recent years, it is a mantle that Kitty and Michael have actively sought out. Today, they are on an ambitious campaign to increase the accessibility of electroconvulsive therapy—which they say is a painless treatment that should only be used as a last resort for severe depression—but also to reduce the stigma of all forms of mental illness.

They are open about her decades-long battle with substance abuse, depression and her ensuing recovery, particularly the role of electroconvulsive therapy. She has co-written two books—the second, published in 2006 and named Shock: The Healing Power of Electroconvulsive Therapy, is now regularly recommended by doctors around the country.

She has traveled the country and visited support groups overseas to tell her story to dozens of groups of medical students, physicians, mental health experts, medical groups and anyone else who will listen. Next year, she’s making her second appearance at an ECT conference in Scandinavia, where the therapy is more widely accepted than in the United States.

Nearly every week, she fields telephone calls from prospective ECT patients around the country who have heard of her struggles and want reassurance about the treatment.

Together, Kitty and Michael run an ECT webpage—ecttreatment.org—and a support group called “ECT: A Light in the Darkness.” The support group, which meets in their home, brings together ECT patients, people considering the treatment and their family members. She is the patient who can give firsthand experience; he is the loyal family member who can attest to the change ECT can have. “The real challenge now is—Kitty’s obviously at the center of this—to expand and spread this message,” Michael says. “I do it every chance that I have.”

They have lobbied Congress, the FDA and state boards that have tried to restrict access to the treatment. He has made calls to Medicaid directors when they have tried to deny access to ECT.

Michael says his frustration is that there is a life-saving treatment for depression that no one is talking about. On the day we met this summer, The New York Times had published an article about rising rates of college students struggling with depression; the article doesn’t mention ECT and that leads him to say he’ll write an email to the reporter.

Kitty’s story is well-known in the mental health community and in Boston, where Michael is even more beloved now as a liberal icon than he was during his governorship, but not nationally. Michael and Kitty talk about it, they say, because ECT unequivocally turned her trajectory around. “I can’t imagine,” what life would have been like without ECT, she says. “It really saved my life.”

And today, it’s a quite active life—even as he approaches 82 and she 79.

Welch, the psychiatrist who has been treating Kitty since 2001, says he is impressed with how strongly Michael has supported Kitty through her illness and treatment. He likens severe depression to a form of chronic leukemia—a treatable but potentially fatal illness that requires strong family support over a long journey with ups and downs. “I spend enough time with them that I see them in a lot of different kinds of moments. Sometimes they’re just bitching at each other, but it’s always got that solid, granite platform feeling. There’s something under there that the rest of the world doesn’t have enough of,” Welch says. “As a physician taking care of them, it’s a joy.”

Today the Dukakis’ still live in Brookline, Massachusetts, but they now flee to Los Angeles in the harsh New England winters. They dote on a dozen grandchildren who live all over the country. In addition to their ECT advocacy, they both sit on boards for all sorts of causes, such as the New England Center for Children and the U.S. Holocaust Memorial Council. Kitty and Michael get annoyed with each other in the way that only a couple married for 52 years can do. Sometimes it is because he is always late and she likes to be early or because he’s frugal and she’s not. But they call each other sweetie and finish each other’s sentences.

The almost-U.S. president—his dark hair now greyed and his back stooped—still takes public transit and his habit of picking up litter as he walks to work is Boston lore.

People chuckle at his earnestness, says friend Vinnie Strully, the CEO of the New England Center for Children, an autism advocacy group where Michael has been on the board for years. “He’s really tight with money and his wife teases him publicly about it all the time,” Strully says. “He still rides the Green Line, he picks up trash on his way to work. He has never stopped being interested in transportation.”

Indeed, spotting the former Democratic nominee is a favorite local pastime: In July, someone tweeted a photo of him picking up garbage near Fenway Park and in August a woman reported running into him scooping up an abandoned food wrapper and a used napkin in the Park Street MBTA station.

He devotes much of his time to his work at Northeastern, where his classes are known on campus as tough but worthwhile, and he says is a better college professor for having experienced Kitty’s depression. He explains that instead of writing off a failing student as an adult who should know better, he will call the underperforming student into his office and makes sure he or she is not in need of help.

He also counsels rising Massachusetts Democrats and campaigns on behalf of candidates. When Seth Moulton challenged incumbent Democratic Rep. John F. Tierney last year, Dukakis was one of the few establishment Boston Democrats to meet with the up-and-comer. Dukakis didn’t offer support but gave him general campaign advice, Moulton says. When Moulton ousted Tierney in a hotly contested primary, Dukakis ultimately campaigned for him.

Now, Kitty and Michael are lobbying Rep. Moulton—an Iraq War veteran who had made veterans health a central issue—to make ECT more accessible in the Veterans Health Administration. Moulton says that he’s looking into it. “Any time that the Dukakises call, I take their suggestions seriously,” he says.

***



For the first four years after treatment, Kitty had ECT as needed, sometimes going nearly a year between a series of treatments. But several years ago, Welch put her on a maintenance schedule of one ECT treatment every six weeks. Because she gets it that often, she isn’t on any medication.

Kitty Dukakis's 1990 memoir revealing her substance abuse was a watershed moment in her years-long struggle. | AP Photo

On each treatment day, Michael drives her to McLean Hospital outside of Boston at about 6:30 a.m. He sits in the waiting room, working through a briefcase full of papers, while she undergoes the procedure. Afterward, the effects are minor; some days she sleeps off a slight headache, others, she feels fine and is able to go about her day.

The treatments “are a part of my life and it's part of the reason I’m feeling as constantly good as I have,” she says. “It’s the one treatment that has worked for me.”

Psychiatrists recommend ECT as a last resort to treat depression when medications and talk therapy aren’t working—or when a patient has such a severe case that there is a dramatic concern of suicide. Typically, patients have been trying alternatives for years when they turn to ECT as a last resort—just like Kitty Dukakis did. The therapy is also used to treat bipolar disorder, schizophrenia and catatonia—when a patient is essentially frozen in an unresponsive state but appears to be awake.

The biggest downside of ECT treatment today is memory loss. Kitty says that her first rounds of treatment did erase some substantial memories but it is not nearly as bad now that she is on a less frequent maintenance schedule.

Kitty jokes that she can get by covering up foggy memories on her age. Often, Michael—while nearly everyone knows him as Mike, she still refers to him as Michael—is there with the right name or fact. When she says she is about to turn 89 years old, Michael quickly helps correct her with the right age: 79.

Critics of ECT say that psychiatrists are not as forthcoming about the memory loss as they should be—and earlier versions of the treatment, even as late as the beginning of the 2000s, could indeed wipe out years of memories. But as technology has improved, the memory loss side effects have generally lessened; physicians say they have no way of knowing how severe or long-lasting the memory loss will be.

“ECT is life saving,” says Ken Duckworth, medical director of the National Alliance on Mental Illness, a grassroots mental health advocacy group. “But I’ve had patients tell me that their memory loss is worse than they were told.”

ECT was first developed in the 1930s in Italy, where a physician had a theory that something about the seizures experienced by a person with epilepsy could cure a very severe case of schizophrenia.

In those early days, ECT looked nothing like it does today. It more closely resembled One Flew Over the Cuckoo’s Nest—the 1975 film that has caused such a lasting, negative stigma of ECT that Michael merely calls it “the movie.” The seizure was produced with medication, making it somewhat unpredictable in when it would strike and how severely. There was no anesthesia, so patients felt intense pain and sometimes broke bones from the violent seizure. Later, electricity was brought in because doctors could use it to measure and control the seizure.

Since the 1980s in the United States, ECT has been administered with anesthesia, which ensures the patient won’t feel anything, and muscle relaxants, which eliminate the violent shaking. A video of an ECT treatment conducted today shows that the patient barely moves—just enough for the physician to ensure that a seizure took place.

“Very early ECT was basically plugging the brain into the wall socket with electricity available and channeling it to the brain,” says Dr. Matthew Rudorfer, associate director for treatment research at the National Institute of Mental Health. “It was very strong and probably overkill.”

Doctors today focus on delivering the smallest amount of electricity as possible for the shortest time needed to cause a seizure.

***



There is a very short list of famous public advocates of ECT. There are, in fact, just two: Michael and Kitty. Few other people who have undergone ECT treatment are public about it—a phenomenon that Kitty and Michael hope to reverse to the point where people can be as comfortable talking about mental health therapies as other health care treatments.

ECT also has no corporate backing. Prescription drug makers have millions of dollars to spend on marketing campaigns and television ads for treatments for depression, but as Rudorfer says, there is no corporate money behind the makers of ECT machines.

“ECT has been in use for over 75 years and you don’t see commercials for it, you don’t see billboards for it and there are no multinational corporations marketing the intervention,” he says. But there is a reason it is still around: “It occupies this very specialized niche that despite the revolutionary advances (in medicine), nothing else has been able to fill.”

Most often, Kitty’s advocacy is done on a one-to-one basis. She welcomes the random out-of-the-blue phone calls and emails she receives. She even listed an AOL email address on the back of her book to encourage people to ask questions. When they ask, she walks through what the procedure is like and provides the comforting ear of a grandmother figure who has been there.

Former Massachusetts Governor Michael Dukakis wakes up at dawn to drive his wife Kitty to her regular ECT treatments. | AP Photo

“These folks are not only so depressed, but they’re scared,” Kitty says. “They’ve had therapy, they’ve taken all this stuff and this thing comes along—it’s electricity—you can understand why they’re apprehensive.”

Michael says that typically after those conversations, patients choose to try ECT. The impact she’s had isn’t lost on Kitty.

“The first few people I talked to were so dramatic—both of them didn’t want to live anymore—and then when they give you credit for saving their lives, that’s a pretty big compliment and they talk about it often,” she says. “It’s a pretty heady thing.”

For that reason, Kitty and Michael are a cause celebre in the world of psychiatry. Physicians praise her courage for being open about her depression and treatment and for sharing the deeply personal details of her life.

Mary Cassesso, the president of the Cambridge Health Alliance Foundation, which gave Kitty the long standing ovation in April, says she’s not sure Kitty truly realized the impact she’s had by telling her story.

“I’m sure she is so used to Michael being honored and thought it’s so nice that they’re giving this one to both of us,” says Cassesso, who also worked in state government during the Dukakis administration. “What she probably never realized until that event—which was filled with mental health professionals—is what a hero she is to that community.”

