Author Archives: Rachel Zimmerman

Blogger, CommonHealth Rachel Zimmerman worked as a staff reporter for The Wall Street Journal for 10 years in Seattle, New York and in Boston as a health and medicine reporter. Rachel has also written for The New York Times, the (now-defunct) Seattle Post-Intelligencer and the alternative newspaper Willamette Week, in Portland, Ore., among other publications. Rachel co-wrote a book about birth, published by Bantam/Random House, and spent 2008 as a Knight Science Journalism Fellow at MIT. Rachel lives in Cambridge with her husband and two daughters.

Suicide Prevention Campaign Approaches Men ‘On Their Own Terms’

Franklin Cook, project manager of the MassMen campaign, and Candice Porter, executive director of Screening for Mental Health, using the MassMen website. (Lynn Jolicoeur/WBUR)

Franklin Cook, project manager of the MassMen campaign, and Candice Porter, executive director of Screening for Mental Health, using the MassMen website. (Lynn Jolicoeur/WBUR)

Franklin Cook of Watertown knows the issue of suicide among men all too well. In 1978, when Cook was 24, his father killed himself.

After that Cook struggled with addiction and found recovery, suffered from depression but got treatment, and built a career in suicide prevention and suicide grief support.

He knows many men struggle to seek help for mental illness.

More men than women die by suicide, and across the country middle-aged white men have the highest suicide rate of any age group.

“But the care-giving world also doesn’t market or doesn’t design programs specifically around our species, if you will,” Cook says. “[Some men] might not want to sit down face-to-face and talk to somebody for 55 minutes about their feelings. I’ve done that hundreds of times with a counselor, and it works for me, but it doesn’t work for all men.”

Now Cook is helping lead a Massachusetts suicide prevention campaign centered around a new website called MassMen.org. It was created by the Wellesley-based organization Screening for Mental Health, with funding from the state Department of Public Health.

On the site, people can complete an anonymous mental health screening in about two minutes to find out whether their feelings and behaviors are consistent with depression or another mental health disorder. They get results immediately and after the screening a “video doctor” does an interactive assessment.

“I’m concerned about your symptoms. I want to be sure you’re aware of the impact this can have on your health and well-being,” the video doctor, portrayed by an actor, says in one portion of the segment. “To help me understand how you feel about taking steps to feel less depressed, I have a question for you. On a scale of one to nine, how ready would you say you are to take steps to feel better?”

Candice Porter is executive director of Screening for Mental Health and a clinical social worker. She points out that while middle-aged men have the highest suicide rate, many of them may not be “moping around,” appearing overtly sad or depressed.

“They might mask their symptoms in a lot of ways that we’re not recognizing, and they’re not seeking the help,” Porter says. But she adds that even though the men might not seek counseling or treatment, many people who die by suicide visit their doctor for some physical ailment in the months leading up to their death.

“We do know that the primary care physicians are not asking the question, ‘How are you feeling? Are you depressed? Have you had thoughts of wanting to end your life?'” Porter explains. “So part of what we’re also trying to do is just increase awareness that these questions should be asked.”

The MassMen site also directs users to resources including mental health services in their communities.

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Patient Empowerment: Why Angelina Jolie’s Menopause Matters

Angelina Jolie (Gage Skidmore/flickr)

Angelina Jolie (Gage Skidmore/flickr)

You’ve probably never linked Angelina Jolie Pitt and menopause in a single thought before.

But there they were, connected on the opinion page of The New York Times Tuesday: The actress and filmmaker whose fecund family life and sexy beauty seem to embody female fertility, and the hormonal changes that mark female fertility’s end.

Jolie Pitt, 39, explained in her piece that because she carries a genetic cancer mutation and a strong family history of fatal ovarian cancer, she decided to get preventative surgery — the removal of her fallopian tubes and ovaries — to reduce her cancer risk. (Jolie Pitt previously underwent a preventive double mastectomy to lower her risk of developing breast cancer.)

Due the recent surgery, she writes: “I am now in menopause. I will not be able to have any more children, and I expect some physical changes. But I feel at ease with whatever will come, not because I am strong but because this is a part of life. It is nothing to be feared.”

Needless to say, the Times piece has triggered a media storm of opinion (“Hollywood will finally have to start talking about menopause”) and praise (for her “eye-watering courage”), including a thoughtful medical discussion on Here & Now.

Here, an expert on sexual health after cancer weighs in. Sharon Bober, Ph.D. is the director of the Sexual Health Program at the Dana-Farber Cancer Institute and assistant professor of psychology in the Department of Psychiatry at Harvard Medical School. She writes about the need for more education and frank talk about how patients can have a healthy sexual life after cancer and cancer-related surgeries:

Angelina Jolie Pitt has issued a resounding call for women at high risk for hereditary breast/ovarian cancer to learn about their options, “take control” and make decisions to manage their cancer risk. Jolie carries a mutation and has strong family history of this lethal disease. Because there is no effective screening for ovarian cancer, she has decided to follow her doctors’ recommendation to remove her ovaries at the age of 39.

But, as Jolie Pitt explained in her New York Times editorial, this blunt instrument of cancer risk-reduction comes with a high cost: immediate surgery-induced menopause.

One of the primary reasons that many high risk women do not move ahead with the same recommendation to remove their ovaries is fear of menopause and worry about quality of life.

Young women are understandably distressed about losing their sex life, their sense of femininity and are worried about the impact of these changes on dating or relationships. Unfortunately, these fears often go unaddressed and women assume that profound side effects are part of the high cost they must pay for undergoing potentially life-saving surgery.

In fact, for both high-risk women contemplating risk-reducing surgery like Jolie, as well as for young women who have been treated for cancer, it has been shown that sexual health is one of the most common and distressing treatment-related concerns. And yet, women’s sexual health is rarely discussed in most treatment settings.

Jolie Pitt declares that knowledge is power and I agree. I believe strongly that all women should have the information and education needed to address the side effects of treatment-induced menopause including how to manage changes in sexual health. For example, Jolie’s decision to use a regimen of hormone replacement to manage the shift into menopause makes sense for her but it is not a course of action that would be recommended for women who previously had breast cancer. However, breast cancer survivors struggle with treatment-induced changes like vaginal dryness, atrophy and loss of libido.

I recently worked with a 40-year-old breast cancer survivor who had been having painful sex with for 4 years and had no idea that help was available. Her first comment was that because no one ever spoke about it, she assumed this problem was supposed to get better on its own and when things got worse, she concluded that nothing could be done. Continue reading

Pathologist: What Women Need To Know About Breast Biopsy Accuracy

A breast biopsy which illustrates the grey zone of pre-cancer (Courtesy of Dr. Michael J. Misialek)

A breast biopsy which illustrates the grey zone of pre-cancer (Courtesy of Dr. Michael J. Misialek)

By Michael J. Misialek, MD

If you’re a woman who has ever had a breast biopsy, you may be asking yourself a few serious questions:

“How do I know if my breast biopsy is completely accurate?” And, “Who is the pathologist reading the biopsy, and what is their level of training?”

Many more patients are asking these and similar questions following widespread media coverage on a Journal of the American Medical Association (JAMA) study, which casts doubt about the accuracy of interpreting these biopsies.

Let’s break the study down and ease some anxiety. Perhaps most importantly, this provides a great opportunity to learn about one of the lesser know medical specialties, pathology…which is what I do.

The JAMA study, “Diagnostic Concordance Among Pathologists Interpreting Breast Biopsy Specimens,” revealed the following key finding:

• Overall agreement between individual pathologists’ interpretations and that of an expert consensus panel was 75 percent, with the highest agreement on invasive breast cancer and lower levels of agreement for ductal carcinoma in situ (DCIS) and atypical hyperplasia.

What this means is that the agreement between a general pathologist and an expert was excellent for breast cancer (those with the ability for metastasis), but varied significantly for early cancers and high-risk pre-cancers.

While the study’s findings may not be surprising to physicians who understand the challenges of diagnosing complex breast cases, news of the article could lead to unnecessarily heightened anxiety for patients and the public as breast cancer is a highly publicized and pervasive disease.

The study confirmed that the majority of breast pathology diagnoses, especially at either end of the spectrum (benign disease and invasive breast cancer) are accurately made by practicing pathologists regardless of practice setting. The overall rate of agreement for invasive breast cancer cases was 96 percent.

Issues with diagnostic disagreement mainly center on the borderline cases, between atypical hyperplasia, that is, pre-cancer, and DCIS, early cancer.

Why does this matter? Overdiagnosis can lead to unnecessary surgery, treatment and anxiety. Underdiagnois can lead to a delay in treatment. The bottom line is that experience matters.

Factors that contributed to greater disagreement included: a low case volume, small practice size, nonacademic practice and high breast density.

The study has many weaknesses. Chief among them was that only a single slide per case was given to each pathologist. As a practicing pathologist, this never happens. I will review multiple slides, often ordering several additional deeper sections and ancillary special stains, studying each carefully. This practice was prohibited in the study.

Additionally, the study cases were a mixture of core biopsy and excision specimens. A core biopsy is obtained using a needle, often by a radiologist, in which a small core of tissue is removed. An excision is a “lumpectomy” which is done in the operating room where a large section of breast tissue is removed. Diagnostic criteria vary between a needle core and excision. Often times it is not necessary to render an exact diagnosis on the core biopsy, but rather recognize an abnormality and recommend an excision for which additional tissue will clarify the diagnosis.

Even the experts disagreed in the study (75 percent initial agreement then 90 percent after discussion).

This illustrates the fact that pathology is both a science and art. Experts may stress slightly different criteria in their pathology training programs. The “eye of a pathologist” is a difficult measure to quantify and is dependent on multiple factors that best function in real time, not an artificial study.

Another weakness is that there is no evidence that the experts were more accurate in predicting outcomes than test subjects. Perhaps most importantly, a second opinion was not allowed in the study, even when study participants indicated uncertainty. These are in fact the very cases that would most likely have been shown around, sent out for consult and further worked up.

It is not realistic to introduce such a large caseload of breast biopsies that are heavily weighted towards atypical hyperplasia and DCIS. Since these borderline cases represent only a small fraction of breast biopsies in actual practice, diagnostic agreement in routine practice is higher than that reported in this study. No clinical information other than patient’s age was given to the study pathologists, and no imaging findings were included. In actual practice, integration of the clinical setting and imaging findings is routinely used in making a diagnosis.

The findings are not unique to pathology. All of medicine has grey zones, where controversy often exists. The study does have an important message for pathologists. As noted in the accompanying editorial, it should serve as a “call to action.” A better, more reproducible definition of atypical hyperplasia is needed.

The article highlights the need for an active quality management program in surgical pathology that includes targeted review of difficult or high risk cases. The College of American Pathologists (CAP) and the Association of Directors of Anatomic and Surgical Pathology have been developing an evidence-based guideline expected to be released in May to provide recommendations to reduce interpretive diagnostic errors in anatomic pathology.

The CAP is proactively addressing educational opportunities through advanced breast pathology training programs designed to provide a route for pathologists to demonstrate their expertise regardless of the setting in which they practice.

Patients can take steps to help ensure their breast biopsy is read accurately:

o Inquire about the pathology laboratory that will examine your tissue sample. Is the laboratory accredited? The CAP accredits more than 7,600 laboratories worldwide and provides an online directory for patients. Continue reading

Study: A Simple, Cheap Way To Help Low-Income Kids With ADHD

Boston Medical Center (Wikimedia Commons)

Boston Medical Center (Wikimedia Commons)

Say you’re a pediatrician whose 8-year-old patient is showing symptoms of Attention Deficit Hyperactivity Disorder. That’s not unusual, up to 12 percent of American kids are diagnosed with it.

But you know that in general, ADHD treatment tends not to work as well in poor kids, like your patient, as it does in their better-off peers. And you also happen to know that the symptoms began two months after the patient’s father was incarcerated. It might be ADHD, or it might just be horrible stress. What do you do?

This is the kind of challenge that routinely faces pediatricians at Boston Medical Center, where most of their patients comes from the inner city, says Dr. Michael Silverstein, chief of the hospital’s division of General Academic Pediatrics.

In a study of 156 young patients just out in the journal Pediatrics, Silverstein and colleagues report some success with an experimental intervention they designed to address such challenging cases.

They found that with a relatively modest investment — about a week of training for a care manager that the patients’ families interact with anyway — they could “move the needle” on ADHD symptoms and social skills, he says.

I asked him to elaborate. First, the background:

General pediatricians tend to be fully equipped to treat straightforward cases of ADHD, Dr. Silverstein says, but for tougher cases like the one described above, and many among BMC’s population of vulnerable kids, they need specialists to address the more vexing issues. One proven model of providing that expertise is called “collaborative care.”

Providing care for low-income kids through mechanisms that address the health of both generations, parents and children.

The pediatrician is “driving the boat,” he says, but the specialists “essentially provide what we call ‘decision support.’ They say, ‘For someone like who you’re describing to me, I would try something like this.’ They give the rules of the road to the primary care doc, but the primary care doc drives.

And because it’s so hard to get busy people into the same room at the same time, the communication between the primary care doctor and the specialist is mediated through a ‘care manager’ intermediary.” (Ideally, a child psychiatrist would be right down the hallway, but that’s “pie in the sky” for under-resourced hospitals like the BMC, he notes.)

Research has shown that collaborative care works well, “but at BMC and places like it, this way of delivering care is probably necessary but not sufficient.” The reason? “A lot of kids with symptoms of ADHD don’t get better even when treated optimally. Why is that? You give them access to proper medication, the diagnosis is made properly, yet they don’t get better. And we homed in on three reasons that kids with ADHD symptoms may not get better that really were relevant to our population:

• The first is that we know that parents of children with ADHD have a disproportionate burden of mental illness themselves. You could imagine a child’s improvement trajectory might not be as good if his mother is depressed.

• Also, in general we see a guardedness about going to the doctor for behavioral problems — that’s not in everyone’s cultural frame of reference. So the idea of medication for inattention might not be where everyone is at. These are potentially stigmatizing conditions, so lots of times people recommend a course of action — medication or something else — but the families aren’t quite there.

• And the third reason is that we know that for certain children with ADHD, behavioral therapies work really well in addition to medication, but our families tend not to have access to those.

So we developed an intervention that was hung on the structure of collaborative care, where the care managers who serve as intermediaries between specialists and generalists are trained to address those three things. Continue reading

Not Male Or Female: Molding Bodies To Fit A Genderfluid Identity

From left to right, Devon Jones, Dale Jackson and Taan Shapiro. (Courtesy)

From left to right, Devon Jones, Dale Jackson and Taan Shapiro. (Courtesy)

For more than three years, Devon Jones gave himself weekly shots of testosterone to align his body with the feeling that he was male. The shots worked. Jones’ voice dropped, body fat shifted from his thighs and breasts into his neck and stomach, and he sprouted facial hair.

But then last year, Jones, a 27-year-old author who lives in Dorchester, stopped taking the hormone.

“I realized that wasn’t the look I was ultimately going for,” Jones said. “I wanted to still have breasts that had substance to them, they’d really shrunk and I wanted that back.”

And Jones wants the option of getting pregnant and having a child, something he could not do while testosterone overpowered estrogen in his body. It’s not clear if he will be able to get pregnant now.

“I’ll only know that when I try,” he said.

Jones still use male pronouns. The changes to his voice are permanent. But as estrogen again becomes the dominant hormone in Jones’ body, the hair on his face doesn’t grow as quickly and his body fat has shifted back.

“I have a more curvy feminine shape. I’m more comfortable now with people being confused. So it’s an evolving process. It’s weird to be in the middle of it right now actually, and talking about it,” Jones said, his voice trailing off.

Jones is part of a growing group of young adults who are genderfluid and are using hormone therapy and surgery to create bodies that matches this identity.

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What To Expect When You’re Birthing At Home: A Hospital C-Section (Possibly)

Screen shot 2015-03-20 at 9.07.11 AM

By Ananda Lowe
Guest Contributor

The term “homebirth cesarean” didn’t exist before 2011, when Oregon mother and student midwife Courtney Jarecki coined it. But now, a Google search returns almost 2,000 entries on the topic.

The term refers to a small but emerging community of mothers who have experienced the extremes of birth: They’d planned to have their babies at home, but ended up in a hospital, most often in the operating room having a cesarean section, major abdominal surgery. Needless to say, the effect of such a dramatic course change takes a toll, and can often be overwhelming.

(“Homebirth cesarean” can also refer to births that were planned to occur at a freestanding birth center outside of a hospital, but eventually were transferred to the hospital for a cesarean.)

How often does this happen?

Home births, though a small fraction of the approximately 3.9 million births a year in the U.S., are on the rise. Based on the most recent birth data from the National Center for Health Statistics, “the 36,080 home births in 2013 accounted for 0.92% of all U.S. births that year, an increase of 55% from the 2004 total.”

Eugene Declercq, a professor of community health sciences at Boston University School of Public Health, studies national birth trends. He said in an email that while there are no nationwide numbers on homebirth transfers to the hospital, “the studies that have been done usually report about a 12% intrapartum transfer rate.”

But beyond the numbers, what happens emotionally when your warm and fuzzy image of natural childbirth in the comfort of home suddenly morphs into the hard reality of a surgical birth under fluorescent lights?

A woman who'd planned a homebirth but ended up having a cesarean in the hospital. (Photo courtesy: Courtney Jarecki)

A woman who’d planned a homebirth but ended up having a cesarean in the hospital. (Photo courtesy: Courtney Jarecki)

Jarecki founded the homebirth cesarean movement to figure that out. She connected women who, like herself, shared the experience of giving birth through full surgical intervention, despite their original plans of having their babies at home or outside of the established medical system.

In Jarecki’s case, she labored at home for 50 hours until her midwives detected a rare complication known as a constriction ring, or a thickened band of tissue in her uterus that was impeding progress. Shortly after this, meconium appeared, and Jarecki knew it was time to go to the hospital. Her emotional response to the intensity of the situation, however irrational, was one of anger, shame and failure at her ability to give birth normally. A cesarean followed.

Over the next several years, Jarecki began helping other homebirth cesarean mothers emerge from the silence and shame they felt confronting their unexpected surgeries. Some of these women also report that their postpartum recovery was tougher because their unique needs were not adequately addressed by their home birth midwives or their hospitals.

Jarecki started by launching a (now busy) Facebook page as a support group for these mothers and their health care providers.

Childbirth Expectations vs. Reality

Rule number one in childbirth is that it rarely unfolds as you expect. Continue reading

Federal Mental Health Chief Calls Rising Suicide Rate ‘Unacceptable’

Dr. Tom Insel is a neuroscientist and psychiatrist, and he’s been the director of the National Institute of Mental Health (a division of the National Institutes of Health) since 2002. He recently helped lead the development of “A Prioritized Research Agenda for Suicide Prevention: An Action Plan to Save Lives” with the National Action Alliance for Suicide Prevention. WBUR’s Lynn Jolicoeur spoke with him about the state of research into and understanding of suicide.

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The Science Of Suicide: Researchers Work To Determine Who’s Most At Risk

Harvard psychology professor Matt Nock and research assistant Nicole Murman demonstrate the Implicit Association Test related to suicide risk. (Robin Lubbock/WBUR)

Harvard psychology professor Matt Nock and research assistant Nicole Murman demonstrate the Implicit Association Test related to suicide risk. (Robin Lubbock/WBUR)

Part of an occasional series we’re calling “Suicide: A Crisis In The Shadows

BOSTON — Up on the 12th floor of a nondescript concrete building in Cambridge, about a dozen Harvard University researchers spend their days trying to crack the code on something that’s eluded scientists for decades.

“We’re really lacking in our ability to accurately predict suicidal behavior and to prevent it,” says psychology professor Matt Nock, who runs the so-called Nock Lab, which is focused entirely on suicide and self-harm. “We are really struggling with identifying which people who think about suicide go on to act on their suicidal thoughts and which ones don’t.”

Nock demonstrates a computer-based exercise he’s using in his research, known as the Implicit Association Test, or IAT. The test asks patients to quickly classify words related to life or death — such as “thriving” or “suicide” — as being like them or like other people.

“For suicidal people, they’re faster responding when ‘death’ and ‘me’ are paired on the same side of the screen. People who are non-suicidal are faster responding when ‘death’ and ‘not me’ are paired on the same side of the screen,” Nock explains.

He and his team are evaluating the test by trying it out with patients in the psychiatric emergency room at Massachusetts General Hospital. The study participants do one other word classification exercise called Stroop and answer questions about addiction, mental illness and suicidal thoughts or behavior. Continue reading

Dementia As A Global Public Health ‘Tidal Wave’

We often think of dementia as a private, intimate hell. A mother no longer recognizes her daughter’s voice. A father rages incoherently at a family dinner.

But it’s worth remembering the global scope of dementia; it’s a looming, worldwide public health disaster, a ‘tidal wave,” as the head of the World Health Organization recently put it, that’s growing worse each year.

This week, the World Health Organization held the first-ever ministerial conference calling for global action against dementia, saying, essentially, enough already, this is something we really need to deal with now.

The WHO’s Director General, Dr. Margaret Chan, offered some sobering perspective in her opening remarks and noted that there are three specific reasons to act now: “Dementia has a large human cost. Dementia has a large financial cost. Both of these costs are increasing.”

According to remarks distributed by the WHO, Chan spoke of dementia, including Alzheimer’s, in dire terms:

“The world has plans for dealing with a nuclear accident, cleaning up chemical spills, managing natural disasters, responding to an influenza pandemic, and combatting antimicrobial resistance. But we do not have a comprehensive and affordable plan for coping with the tidal wave of dementia that is coming our way.”

And the numbers are staggering:

–Dementia currently affects more than 47 million people worldwide, with more than 75 million people estimated to be living with dementia by 2030. The number is expected to triple by 2050.

–Dementia leads to increased long-term care costs for governments, communities, families and individuals, and to productivity loss for economies. The global cost of dementia care in 2010 was estimated to be U.S. $604 billion – 1.0% of global gross domestic product. By 2030, the cost of caring for people with dementia worldwide could be an estimated US $1.2 trillion or more, which could undermine social and economic development throughout the world.

–Nearly 60% of people with dementia live in low- and middle-income countries, and this proportion is expected to increase rapidly during the next decade, which may contribute to increasing inequalities between countries and populations.

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Wishing They Asked Tough Questions: Reflecting On A Father’s Suicide

Valerie Alfeo files through a table full of old family photos at her home in Waltham. Her father, Ted Washburn, took his own life in 2011. He was 54. (Jesse Costa/WBUR)

Valerie Alfeo files through a table full of old family photos at her home in Waltham. Her father, Ted Washburn, took his own life in 2011. He was 54. (Jesse Costa/WBUR)

Part of an occasional series, “Suicide: A Crisis In The Shadows

WALTHAM, Mass. — TJ Washburn first learned his father, Ted Washburn, was battling depression in 2009. That’s when the then-52-year-old starved himself for three days.

“He said basically that he was planning on not eating or drinking anything until he passed away,” TJ recalls. “And obviously shock kind of sets in at first.”

Ted, who lived in Waltham, spent a few weeks in two psychiatric units. And during that time his son was stunned to learn he had attempted suicide at the age of 21 — two years before he started having children.

“To think that he could have taken his life before I was born was something that was just… surreal is the best word that I keep using — that I can’t really imagine,” TJ says.

But in 2009, when their father got out of the hospital and right back into his routine as a truck driver, TJ and his sister, Valerie Alfeo, say he didn’t talk about his depression. And they didn’t ask much.

“I was scared. I mean, for me it’s half of the people who created me. You still have them on a pedestal to some degree, even at late 20s, early 30s,” TJ reflects. “I mean, I still would go to him, ask him for his advice. I guess I wasn’t prepared to be kind of on the other end, and be the one giving any advice.”

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