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A Death, And A ‘Changed Life’: Traumatic Births Take Toll On Health Workers Too

Sarah Jagger and midwife Stephanie Avila were together when Jagger's son suffered a brain injury during labor that led to his death. Here, about a year later, in 2013, Jagger and Avila share a moment of gratitude after the safe arrival of a healthy baby girl. (Courtesy of Orchard Cove Photography)

Sarah Jagger and midwife Stephanie Avila were together when Jagger’s son suffered a brain injury during labor that led to his death. Here, about a year later, in 2013, Jagger and Avila share a moment of gratitude after the safe arrival of a healthy baby girl. (Courtesy of Orchard Cove Photography)

Everything seemed fine until the little boy was born.

He wasn’t breathing, but his heart was strong, recalled Stephanie Avila, the midwife attending the baby’s birth at a Rhode Island hospital back in 2012. But it soon became clear that the boy had suffered a brain injury during labor.

Eleven days later, after an MRI confirmed the severity of the injury and the family withdrew life-support, the child died. His official diagnosis: hypoxic ischemic encephalopathy, a brain injury caused by oxygen deprivation.

“I was prepared to stand by the family through this trauma,” Avila said in an interview. “But I fully expected I’d get sued — and it was going to get ugly, or uglier.”

Of course, the little boy’s family was devastated. “I just went into my own world,” said his mother, Sarah Jagger, speaking about the loss of her son.

But Avila suffered too. “I was a wreck,” she said.

Immediately after the birth, Avila said, she remained on call overnight at the hospital, Women & Infants, in Providence. “I retreated to the call room and curled up in the fetal position and prayed that no other people in labor would show up. I cried, had the worst headache I’ve ever had in my life, and felt like I’d vomit. For days I felt emotionally and physically terrible. I’d be walking down the street and suddenly could no longer move.”

At the time, Avila had two small children of her own. “And whenever my 2-year-old would do this cute thing, I’d think, their baby will never walk around in his mother’s high-heeled shoes. I’d get these terrible thoughts and I’d never know when it would strike.”

The Psychological Toll

After a traumatic birth — or any traumatic medical event — attention, rightly, turns to the grieving family. But research has been mounting in recent years that health care providers, sometimes called “the second victims,” also sustain long-lasting emotional damage following such a trauma.

A new study published by Danish researchers underscores the phenomena: Midwives and obstetricians who experienced a traumatic birth — one involving severe injuries or death — report that the psychological toll of such an event is deep and long-lasting.

More than one third of those surveyed said that they always would feel some sort of guilt when reflecting on the event, researchers report. Nearly 50 percent agreed that the traumatic birth had made them think more about the meaning of life. “This tells us that health care professionals are affected, not only professionally, but also at a personal and even existential level,” said Katja Schrøder, the study’s first author and a Ph.D. fellow at the University of Southern Denmark.

‘Changed My Life Forever’

This was indeed the case for Avila. “I feel as though that day — even to this day — changed my life forever in many ways,” she said. And while the “acute” nature of the trauma has passed, she said, the enormity of it continued to grip her, sometimes unexpectedly and at random times.

In the Danish study, published in Acta Obstetricia et Gynecologica Scandinavica, a journal of the Nordic Federation of Societies of Obstetrics and Gynecology, more than 1,200 Danish obstetricians and midwives responded to a survey on the aftermath of a traumatic birth. Of those respondents, 14 were selected for a followup interview.

Many of the providers spoke of not being able to shake the trauma, whether they were blamed for the bad outcome or not. “Although blame from patients, peers or official authorities was feared (and sometimes experienced), the inner struggles with guilt and existential considerations were dominant,” researchers report.

From the paper:

One mid-wife explained that even now, 12 years after the event, she would still think about that particular mother and child when passing through their town…

Most participants described having spent many hours agonizing and wondering whether they could have prevented the adverse outcome. One midwife said that her sense of guilt would never disappear because she knew that the parents would have to live with the consequences of her handling of the delivery.

Still, the researchers found that for many providers, “the traumatic childbirth had given rise to personal development opportunities of an emotional and/or spiritual character …for instance by achieving a more humble and profound understanding of both professional roles and of life as a whole.”

A Meaningful Meal

About a month after her infant son’s death, Jagger did something unusual: She asked Avila to meet for lunch. Up until then, the two women had been in touch — Avila had called to check in often, offering to help out and attend followup medical appointments with Jagger.

But the lunch date marked a turning point, the women agreed. First, it became clear that Jagger didn’t blame Avila for the boy’s death, and did not want to focus on the tragedy going forward.

“We had this little boy who had a such a short life,” Jagger said. “I didn’t want his life to be clouded in anger. I wanted his life to be about love…and not focus on the horrible part.”

But the meeting also underscored the growing bond between the women. When it was over, they walked outside and Jagger posed a question: “I said to her, ‘If I have another baby, would you deliver it?’ And I think she was horrified. But I think because I trusted her so completely, through the birth, and his death, and her calls and the followup, I felt like she was there with me, like this was our loss, it wasn’t just my loss.”

The Danish research paper quotes Donald Berwick, a pediatrician who served in the Obama administration and is also a patient safety guru of sorts. In a 2009 interview published in the Journal of Patient Safety, Berwick speaks about those “second victims”:

Health care workers’ egos can be big. But believe me, their superegos are a lot bigger. You carry into work — as a nurse, or doctor, or a technician or pharmacist– the intent to do well. And when something goes wrong, almost always you feel guilty, terribly guilty. The very thing you didn’t want to happen is exactly what happened. And if you don’t understand how things work, you feel like you caused it. That creates a victim. My heart goes out to the injured patient and family, of course. That’s the first and most important victim. But health care workers who get wrapped up in error and injury, as almost all someday will, get seriously hurt too. And if we’re really healers, then we have a job of healing them too. That’s part of the job. It’s not an elective issue, it’s an ethical issue.

In the past decade or so, various institutions and nonprofits have emerged with tools and systems to better support medical professionals who have endured a traumatic event.

One of those groups, MITSS, or Medically Induced Trauma Support Services, based in Massachusetts, provides trauma tool kits used around the country.

Linda Kenney, the founder of MITSS, was herself the victim of an anesthesia error that nearly killed her. She said that for her, connecting with the anesthesiologist who caused her injury (he called her afterwards to express his regrets) and creating the nonprofit to help others, helped her heal.

But for health care providers, sometimes talking to peers at a hospital, or others in the institution, isn’t enough and can actually feel isolating, Avila, the Rhode Island midwife, said. Because of the omnipresent fear of lawsuits, and also due to patient privacy laws, she said, “there are very few environments where we can freely discuss what happened.”

A Second Chance

In 2013, a few days shy of what would have been her son’s first birthday, Jagger went into labor with her second child, and she called on Avila to attend the birth. By that time, Avila was no longer working for the same midwifery group, but the practice arranged for her to have insurance during the birth, and Avila left a family gathering on Block Island to get to Providence on time.

Jagger’s little girl is now a healthy 2-and-a-half-year-old who considers Avlia her “auntie.”

“It was this amazingly cathartic experience for all of us,” Jagger said.

Avila is now a family nurse practitioner and attends births less frequently as part of her work. These days, she and Jagger are extremely close: They’ve vacationed together, bake each other birthday cakes and talk almost daily.

“I never would have expected our relationship to evolve to this point,” Avila said. “But despite how close we are now, I would sacrifice it in a moment if I could change the outcome of that first birth.”

Related:

She Wiped Her Nose, Then Prepped My Biopsy. Still, It's Hard To Ask The Nurse To Wash Her Hands

Hand washing before and after touching a patient is mandatory. And before and after walking into a patient’s room or touching medical equipment. (Arlington County/Flickr)

Hand washing before and after touching a patient is mandatory. And before and after walking into a patient’s room or touching medical equipment. (Arlington County/Flickr)

I was lying on my back on a gurney, getting my abdomen washed by the nurse.

She dipped Q-tip-like sticks into the brown antiseptic and then swirled them on my skin where the physician would make his incision. He would penetrate layers of skin and muscle to get into my liver and extract cells. He would send the cells to the laboratory to assess what kind of cancer I had. Eight days earlier, I had learned I had masses in my abdomen and chest. Three days earlier, I had learned the masses were cancer. That day I was on the gurney getting prepped for a liver biopsy, to find out what kind of cancer it was.

While one nurse washed my incision site, another nurse prepared the room. She was adjusting the lights, surgical equipment and my gown. And she rubbed her nose with her hand. Everyone rubs their nose. Humans unconsciously touch their nose or mouth more than 3.6 times per hour.

When we do this, we spread germs into our body from whatever we were touching before and spread germs from our body onto whatever we touch next.

I laid there and wondered if I should say something to her.

In medical school in the early ’90s, I had learned about the risk of normal nose bacteria infecting surgical sites. While on the gurney that day, I remembered a story about a patient with a massive infection in his surgical wound site. The hospital searched for the source of his Staph aureus. They found it in the surgeon’s nose. This story was told to us to remind us of the dangers of what we were seeing on the wards in medical school — which was still full of old-school clinicians who drew blood without gloves and washed their hands only intermittently.

Today things are supposed to be different. Hand washing before and after touching a patient is mandatory. And before and after walking into a patient’s room or touching medical equipment. The compulsory annual online classes for all clinicians include specific directions on how to wash your hands. There are signs on the walls and screen savers on the hospital computers reminding us to wash our hands.

But there I was, flat on my back, wondering if I should say something to the nurse. I was afraid she’d be upset with me if I said something — I was all but naked, lying on my back and pretty much in her hands. The hands that had just wiped her nose. I didn’t say anything. I tried to get my courage up to say something — but couldn’t. A few minutes passed. I decided it was too late to say anything. But I told myself if she did it again, I would say something to her.

And then she did. She rubbed her nose with her hand and then reached for the equipment table with that same hand. The equipment that would be in my liver in a few minutes.

I called her on it. Continue reading

SharingClinic, To Help Patients Tell Their Stories, Opens At Mass. General Hospital

Four years ago, Dr. Annie Brewster had a vision.

Brewster, a Boston internist, who was diagnosed with multiple sclerosis in 2001, had become frustrated that a crucial element of medicine — the human connection between patients and doctors — seemed to be lost in the modern era of 15-minute appointments and overly burdensome record-keeping. As a patient and a doctor, Brewster yearned for a therapeutic arena in which patients could tell their full health stories and feel they were actually heard, not rushed out the door; and where doctors, as well, could share a little more with patients.

Now, with the launch this week of the SharingClinic, an interactive “listening booth” stocked with audio stories from patients facing a range of illnesses, Brewster is a little closer to realizing her vision. Housed at the Paul S. Russell Museum of Medical History and Innovation at Massachusetts General Hospital, Brewster expects SharingClinic will continue to grow over time as more stories are collected and added to the kiosk. Eventually, she says, trained staff will begin to facilitate the storytelling in regularly scheduled “clinics” in a way that research suggests might offer an actual health boostContinue reading

Earlier:

Opinion: When The Doctor Must Choose Between Her Patients And Her Notes

By Dr. Mary C. Zeng
Guest Contributor

It’s been a long day in the psychiatry clinic.

Seeing patients is never dull, and each interaction is meaningful in its own way. From the moment they walk into my office to the moment they leave, I try my best to be fully present with the patients sitting in front of me. That means listening to every word, watching every nuance of body language, hearing every concern — both spoken and unspoken. It means bearing their grief as they tell me about the father they’re losing to cancer, their pain as they suffer through profound bouts of depression and their agony as they recall their nightmares of childhood trauma.

It also means putting aside my personal agenda to focus wholly on them, which includes resisting my urge to take notes during the patient interview so that I can save time later, with fewer notes to complete after the patient leaves.

It is a common complaint that doctors look at their computer screens and type on their keyboards more than they listen to their patients. But consider this reality: From the doctor’s perspective, every moment she spends focusing on you, the patient, rather than on the “note” she needs to write up about your appointment, is a debt that must be repaid later in the day. If the doctor can’t complete your note during the 15 minutes you spend with her, then she must add another 15 minutes to the end of her workday in order to finish that note. Multiply that 15 minutes by the 10-15 patients she sees in a day and all of a sudden she has missed the family dinner and the kids are already asleep by the time she comes home.

Continue reading

Opinion: American-Muslim Doctor Reflects On Bigotry At Some Top Hospitals, And Beyond

By Altaf Saadi, M.D.
Guest Contributor

Recently, the wife of a prominent Boston businessman — one of my many wealthy, white patients at Massachusetts General Hospital — greeted me this way: “So what foreign medical school did you go to anyway?”

For background, I’m a petite, Middle Eastern young woman with a headscarf, and I’m guessing I do not resemble her vision of what a doctor “should” look like. That image is probably taller, whiter, male and not Muslim.

My answer (in perfect, unaccented English) to her question about where I was trained? “Harvard Medical School.” After that, her lips remained pursed shut for the rest of our encounter.

As the daughter of Iraqi and Iranian immigrants, such interactions unfortunately have been common for me and my family members since we moved to America weeks before 9/11. When former President Bush declared war on Iraq the following year, for example, my sister and I heard classmates scream, “Go back to your country!” from their pickup truck on our walk home from high school.

I thought that attending college and medical school at Yale and Harvard, respectively, would be my golden ticket to America’s meritocratic dream, that my prestigious diplomas would shield me from future experiences with racism and bigotry. As a neurology medical resident in “liberal” Boston, (and working at a hospital ranked No. 1 by U.S. News & World Report) I also thought that I would be judged based on my medical acumen, not by the color of my skin or the scarf I wear on my head. But I was wrong.

Dr. Altaf Saadi (Courtesy of the author)

Dr. Altaf Saadi (Courtesy of the author)

Another time in the hospital, a male patient told me that his religion is superior to mine. While I was listening to his lungs to help in the management of his shortness of breath, he added, “Why do you wear that thing on your head anyway?” Despite his abrasive behavior, I politely informed him of his treatment plan and told him that I am praying for his speedy recovery.

Another day,  an 80-year old patient with dementia began hitting me on the head when I checked in on her for my daily visit. Pointing to my headscarf, she said, “I don’t want someone with that taking care of me.” Despite her mental condition, the racism still stung as I continued to strive to provide her the best care possible.

My experiences are not isolated. A recent study in the American Journal of Bioethics found that 24 percent of Muslim physicians have experienced religious discrimination in the workplace.

This election year has made it harder to be a Muslim in America. Republican front-runner Donald Trump has advocated for registering Muslims inside the United States and banning those of us who reside abroad. Unfortunately, the majority of Republican Party members agree with him and the number of hate crimes against Muslims have tripled in recent weeks. Yet, I also recognize that Muslims are just America’s newest “outsiders.” Throughout our history, Catholics, Irish, Italians, women, African-Americans, Jews, Latinos and gays have all been targets of nativist fear-mongering. Many of these groups still face significant prejudice today, and hospitals are not immune from such discrimination, whether implicit or explicit.

When I was a third-year medical student, it appeared to me that the pediatric residents and attending physicians would spend extra time caring for the white infants and children during morning rounds. The two African-American babies and one Arab infant admitted to the inpatient pediatrics service at the time were never “oohed and aahed” at and received noticeably less attention. “Have you noticed that only the white children are called ‘cute’?” I asked my friend after our third day on the pediatrics rotation. My friend, an African-American medical student, had his own grievance. He had overheard a doctor refer to an African-American father as an “angry black man.” “I don’t understand,” my friend said. “His daughter is dying, he is upset, and has questions. He’s not asking any more questions than the other parents.”

Our observations were also not isolated incidents. Multiple peer-reviewed studies have shown that physicians unconsciously prefer and spend more time with white patients than African-American ones.

I also recall the occasional episode of overt racism in the hospital. One surgeon — prominent and stern in his crisp white coat — said the following about a Hispanic patient who was coming to have her melanoma examined for excision: “I can’t believe these people! They have been here for a decade, can’t bother to learn English, and we’re stuck waiting for an interpreter.”

But the episodes of implicit racism have been more commonplace. Continue reading

When It’s OK To See A Nurse Practitioner, Physician Assistant — And When It’s Not

(Alex E. Proimos/Flickr)

(Alex E. Proimos/Flickr)

By Dr. David Scales

Let’s say you hurt your knee doing your best Tom Brady impression playing flag football.

It hurts like the dickens and you’re not sure if you tore something or just have a really bad case of tendonitis. You go to your local urgent care clinic, or doctor’s office, and you’re seen by a physician assistant  (PA), who examines you, says everything is structurally intact, and you should use ice, elevate your leg and take some ibuprofen for the pain.

What the PA said makes sense, but shouldn’t you see — you know — the doctor?

Well, maybe not. While it seems to make sense to always ask for an expert, there can be some downsides. It can take months to get an appointment with a doctor, or cost more to see them versus a PA or nurse practitioner (NP). Also, with the holidays approaching, it’s prime season for senior physicians to be away, with the rest of the health care team pitching in. So when is it fine to see someone besides the doctor for your medical care? And when should you avoid it?

Well, who else might you see at a medical clinic? In addition to a doctor, you could see a PA or NP. If you haven’t seen one yet, you will. Medicine is increasingly becoming a team sport, requiring well-synchronized “pit crews rather than isolated physicians. In Massachusetts, for instance, there are already close to 8,000 NPs and over 2,000 PAs and those numbers are rising to fill a growing shortage in primary care. A 2013 study estimates that Massachusetts will need 725 more primary care providers by 2030.

I asked a few NPs and PAs — each with at least five years of clinical experience, and some with more than 30 — what they think patients should know about all this. They agreed that it’s best to focus on experience rather than the degree behind the name. An NP with three decades of experience may be more knowledgeable than an MD who just finished their residency — and I say that as someone who is just about to finish residency.

One of those NPs with over 30 years experience is Lynne Crawford, a primary care NP at Cambridge Health Alliance. She phrased it this way: “If you see someone and you’re uncomfortable with the encounter, it might be your rapport with them rather than the degree behind their name.” Continue reading

Doctor’s Orders: Prescribe Exercise To Patients, Make Physical Activity A Vital Sign

A team of researchers and physicians has issued a “call to action” to colleagues, urging that exercise become a central component of every medical visit. (frodrig/Flickr)

A team of researchers and physicians has issued a “call to action” to colleagues, urging that exercise counseling become a central component of every medical visit. (frodrig/Flickr)

Imagine stepping into the exam room for your regular medical check-up: Your doctor (or an assistant) uses a cuff to check your blood pressure. A thermometer to check your temperature. A stethoscope to listen to your breathing. And then, to check one more vital sign, a simple question: So what are you doing for exercise?

That’s an ideal reality envisioned by a team of researchers and physicians who just issued a “call to action” to colleagues. They urge that exercise counseling become a central component of every medical visit, including by making physical activity a vital sign and prescribing a specific amount of daily exercise to all patients.

We all know that exercise is good for us. But we don’t often consider just how good.

“Physical activity has been shown to reduce the risk of heart disease, stroke, diabetes, certain cancers, osteoporosis, cognitive decline, [hypertension and obesity], and even depression, at minimal cost and with virtually no side effects,” says Dr. JoAnn Manson, chief of the Division of Preventive Medicine at Brigham and Women’s Hospital in Boston. “Can you imagine if there were a pill that could simultaneously have all those benefits? Everyone would be clamoring for it and physicians would be taking it themselves.”

In a “Viewpoint” piece published this week in the Journal of the American Medical Association, Manson and co-authors from the Stanford University School of Medicine and the University of Central Florida offer a new sense of urgency about prescribing exercise to patients.

“A prescription to walk 30 minutes per day could be one of the most important prescriptions a patient could receive.”

– Dr. JoAnn Manson

“No other single intervention or treatment is associated with such a diverse array of benefits,” they write. Adds Manson: “A prescription to walk 30 minutes per day could be one of the most important prescriptions a patient could receive.”

The overwhelming lack of exercise counseling during medical visits is a missed opportunity to dramatically improve patients’ health, Manson said in an interview. With 506 million primary care visits in the U.S. in 2012 (most for prevention and treatment of preventable chronic health conditions), as few as 34 percent of adults report being counseled about physical activity, the authors write.

They also cite research that shows when doctors and other clinicians emphasize the myriad benefits of exercise to their patients, those patients listen.

“Health care professionals are trusted sources for health related information and they can help patients set priorities to improve their health,” Manson said. “It’s one thing to hear on the news that a study showed physical activity is linked to a reduced risk of heart disease. But it’s another thing to have your own physician or health care provider tell you that it’s an important priority for you to walk 30 minutes a day or increase your activity.”

But, she says, many doctors aren’t having these important conversations with their patients about the value of daily exercise.

“It’s not being done,” she said. “There isn’t really any change in behavior on the part of the health care system, [even while] the burden of chronic disease and health care costs have been escalating. …Only about one-third of patients report that physical activity was discussed during a [medical] visit. Even just having these discussions will demonstrate it’s a priority.” Continue reading

Related:

Physician Burnout: It’s Bad And Getting Worse, Survey Finds

More than half of U.S. physicians are now experiencing professional burnout, a survey found. (Eric/Flickr)

More than half of U.S. physicians are now experiencing professional burnout, a survey found. (Eric/Flickr)

A new study suggests that burnout among doctors is rampant and getting worse.

The study — a survey of nearly 7,000 physicians from all specialties, conducted by researchers at the Mayo Clinic and the American Medical Association — concludes that nearly half of doctors in the U.S. experience some level of burnout, defined by the authors as “a syndrome of emotional exhaustion, loss of meaning in work, feelings of ineffectiveness, and a tendency to view people as objects rather than as human beings.”

The long-term implications are profound: Beyond the personal toll, the researchers write, “…burnout appears to impact the quality of care physicians provide, and physician turnover, which [has] profound implications for the quality of the health care delivery system.”

For some context, I turned to someone who has been there: Diane Shannon is a doctor who left her medical career for sheer self-preservation and wrote about it for CommonHealth in 2013. She’s now writing a book on the topic (based, in part, on the overwhelming response to her post). Here’s her view of the new findings, via email:

When I hung up my white coat for the last time and left the practice of medicine, the term, “physician burnout” was unfamiliar. It wasn’t until I stumbled across research studies many years later, in my work as a freelance writer, that I finally understood the underlying reasons that I needed to walk away. Today, you can’t read about health care without seeing the term. Does the widespread use of the phrase reflect heightened awareness or a growing problem among doctors?

A recent study from the Mayo Clinic and the American Medical Association (AMA) physicians begins to answer this question. The three-year study of almost 7,000 found that last year 54 percent of physicians surveyed had at least one symptom of burnout, up from 45 percent just three years before. In the meantime, burnout among people working in other professions remained the same.

The researchers make several suggestions about addressing the growing problem among the physician workforce, including: conducting more research to find ways to reduce burnout, improving the work environment, and recognizing that self-help is not sufficient.

The suggestions reflect a growing recognition — and my personal experience — that individual solutions to burnout, such as stress reduction techniques, resilience training, and mindfulness practice, are effective but not sufficient for dealing with the widespread problem among physicians. As part of the background research for a book I’m co-authoring on how health care organizations can prevent burnout, I spoke last week with Wayne Sotile, Ph.D., founder of the Center for Physician Resilience. He likened the current situation in health care to a five-way intersection with physicians standing at the cross road and no one directing traffic. “It’s as if we’re asking physicians, ‘Please stop getting injured,’ instead of installing a traffic signal to fix the problem.” Continue reading

Health Boost: Story-Sharing Kiosk For Hospital Patients Coping With Illness Set To Launch

If you were really sick, with cancer, let’s say, or a debilitating eating disorder or heart condition that put you in the hospital, would you want to hear from other patients like you? Would you feel better sharing your story? A growing body of research suggests you would.

That’s the idea behind the SharingClinic, a kiosk stocked with a collection of audio clips from patients facing a range of illnesses. It’s set to launch as an interactive exhibit at the Massachusetts General Hospital Paul S. Russell Museum in January. The goal is to ultimately move the listening kiosk into the main hospital.

The project was born out of frustration with a medical system that no longer has the time to really listen to patients, says Dr. Annie Brewster, an MGH internist who’s been developing the listening kiosk for the past four years. Brewster (a frequent contributor to CommonHealth) is also the founder of Health Story Collaborative, a non-profit that helps patients and caregivers tell their own medical stories for therapeutic value.

Patients visiting the SharingClinic can choose from a range of story types and perspectives.  (Courtesy: Tara Keppler, graphic design)

Patients visiting the SharingClinic can choose from a range of story types and perspectives. (Courtesy: Tara Keppler, graphic design)

Ultimately, the MGH kiosk will offer a range of storytelling from different perspectives: hospital patients, their families and friends, doctors, nurses, psychiatrists and others. A touch screen allows listeners to select stories by diagnosis, by theme or by perspective. Listeners will also be able to comment. Currently over 100 clips are already collected, and the process is ongoing. The software, designed in collaboration with computer programmer David Nunez, previously at the MIT Media Lab, allows for easy, regular addition of new content. A downloadable app is currently in development.

“SharingClinic will take on a life of its own, constantly growing and changing, shaped by story sharers and listeners,” Brewster said. Listen to few sample clips:

Why did she embark on all this? Brewster says: “Facing illness can be scary and isolating, and hospitals an be alienating. Our goals are to empower and connect individuals facing health challenges — to remind people that they are not alone — and to improve the culture of the hospital through storytelling.”

Brewster herself is involved in the audio collection and editing process, but has also recruited other providers to help; her goal is to transform the culture of the hospital through storytelling. So far, she has an MGH chaplain and two MGH social workers helping with story collection. Eventually, she envisions having an actual story-sharing “clinic” at MGH — a dedicated physical site, open at a regularly scheduled time, where patients and providers can come to share their stories. She hopes to staff this “clinic” with other healthcare providers across disciplines — doctors, nurses, mental health professionals and chaplains. Story clips will then be plugged into the kiosk, where they can be shared with any visitor to the MGH museum, part of the MGH campus.

“It would, of course, be ideal to have time for such story sharing within medical visits, but I don’t see this happening at any time soon given the structure of the health care system today,” says Brewster. “Because of this, we need to create other opportunities to share, feel listened to and feel like we are contributing to a collective conversation about illness and healing.” Continue reading

Study: Black Men With Prostate Cancer More Likely To Get Worse Care Than White Men

A new study of men 65 or older with localized prostate cancer shows that black men may receive poorer care than white men in treatment for prostate cancer. (M. Spencer Green/AP)

A new study of men 65 or older with localized prostate cancer shows that black men may receive poorer care than white men in treatment for prostate cancer. (M. Spencer Green/AP)

Imagine you’re a 70-year-old black man with prostate cancer. Here’s what a new study reveals about your outlook:

You’re far more likely to get worse medical care than your white counterparts, including more time waiting for your surgery and more emergency room visits and hospital readmissions after surgery. You’ll also likely spend more money on your care. Oddly, though, that inferior care won’t necessarily translate into a worse chance of survival.

The study, published online by JAMA Oncology, specifically looked at a group of men on Medicare with localized prostate cancer. The standard of care for such patients involves either removal of the prostate gland (called a radical prostatectomy or RP), radiation therapy, a combination of the two, or active surveillance (close followup of patients).

Prostate cancer is one of the most frequently diagnosed cancers among men in the U.S., with estimates of about 220,800 new cases in 2015 and approximately 27,540 deaths.

Researchers analyzed data from the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER)-Medicare database for 26,482 men 65 or older with localized prostate cancer who underwent radical prostatectomy. The patients included 2,020 black men (7.6 percent) and 24,462 non-Hispanic white men (92.4 percent).

Some key findings:

59.4 percent of black men underwent RP within 90 days vs. 69.5 percent of white men.

Black men had a seven-day treatment delay compared with white men in the top 50 percent of patients.

Black men were less likely to undergo lymph node dissection.

Black men were more likely to have postoperative visits to the emergency department or be readmitted to the hospital compared with white men.

The top 50 percent of black patients had higher incremental annual costs for surgery, spending $1,185 more compared to white patients.

I asked the study’s lead researcher, Quoc-Dien Trinh, M.D., of Brigham and Women’s Hospital in Boston and Harvard Medical School, to further explain the findings. Here, edited, is our conversation:

Rachel Zimmerman: What are the most extreme examples of disparities you found between black men and white men treated for prostate cancer?

Quoc-Dien Trinh: Blacks were 35 percent less likely to undergo surgery with 3 months of diagnosis; Blacks were 45-48 percent more likely to require a visit to the emergency department after surgery; Blacks were 28 percent more likely to be readmitted after surgery; Blacks were 24 percent less likely to undergo a lymph node dissection at prostatectomy.

How do you account for these dramatic differences in care?

It is possible that blacks are not receiving their care at the best institutions and/or with the best providers. Continue reading