Don’t Be Too Quick to Diagnose Yourself

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Learning all you can to manage your health is clearly a good thing. Today we have more at our disposal to learn a huge amount about our health status, how to intervene to avoid a crisis, and optimize our health. But recently, I’ve seen friends make assessments of their health status that were dead wrong. One could have died. Another might have had cancer, but she thought otherwise. Maybe their doctors would have missed the seriousness of these symptoms too, but I have to hope that, in the right hands, they would do better than you and me.

When a Symptom is Thought to Be Part of a Chronic Condition

A close friend of mine who has had MS (multiple sclerosis) for decades has suffered from MS fatigue, a well-known issue for people with MS. To some extent, there is some nihilism about the fatigue in the MS community. According to the National Multiple Sclerosis Society, fatigue occurs in about 80% of people with MS. The Society cautions that outsiders may misread the symptom as “depression or not trying hard enough.” In addition, the MS fact sheet makes it clear that there is no scientifically proven treatment to deal with this symptom. So letting it be may be what people with MS do.

But while my friend was visiting, I watched him make that miscalculation, attributing fatigue to a flare or worsening of his MS. He could have died. Two weeks ago, I met him at Penn Station, for a weekend visit. He looked bushed. I immediately grabbed his suitcase and got no resistance. We went for a meal and he talked about his “MS fatigue.”

We learned the hard way that his fatigue had nothing to do with MS. He reported bouts of dizziness. We stopped to sit down several times when he was walking. Two hours later, he fell down on a NY Subway platform. When EMS got to him, his blood pressure was down to 70/40 and he was rushed to an ICU. There, the doctors spotted a serious electrolyte imbalance. He could not have managed any of this on his own. We are all thankful that he is alive and for the hospital and emergency medical care that he got.

The culprit in the collapse appeared to be a change in his blood pressure medication. Weeks ago, his doctor had added on a second medication because the first medicine didn’t control it. That medication proved ineffective so the doctor substituted another. It brought his blood pressure down too far. After he was stabilized and rested in New York, I accompanied him home, which is out of state. He’s not out of the woods yet. He still has his blood pressure pills to sort out, which he is doing with his doctor on a schedule that the doctor, not him, is arranging. He doesn’t need another health crisis.

What Looks Like Belly Fat Is Not

I also watched a dear friend attribute her bulging abdomen to postmenopausal weight gain. Never mind that she is serious about exercising and eating nutritiously. Are women so hung up about weight that we cannot realize when a change in our bodies is concerning?

What finally got her to a doctor when a friend noticing a far more swollen abdomen after not seeing her for one month.

The result: she had an 18-pound benign ovarian cyst. Here’s a similar story that articulately shows how women are quick to attribute abdominal bulge to weight gain.  Thankfully, both women had the cysts removed. In both cases, the cysts could have masked cancer.

Not Everything is A Thyroid Problem

In my own experience, I have wrongly attributed feeling hot and cold, fuzzy, or confused to my thyroid being out of whack. Like many women, I have hypothyroidism that is corrected with thyroid medicine. I have certainly had to make changes to my  medicine over the years. But this year, I learned that a urinary tract infection was the likely source of the hot-and-cold and fuzziness – and not my thyroid. I’ve seen older women in nursing homes get loopy with a urinary tract infection, with doctors simply guessing it’s dementia. Like fatigue and feeling fat, feeling hot and cold or fuzzy feels nonspecific, vague, and innocuous symptoms – perhaps something to put aside – or something that it is not at all.

Recognizing the Problem

The patient empowerment movement has made great strides in educating people about illnesses and helping us optimize our health and medical decisions. But there are limitations that we need to be cognizant of. If my fatigued friend with MS had not gotten to the hospital in time, he could have died. How long would it have taken my friend to see a doctor about her large, possibly malignant, ovarian cyst? Do we really always have the best medical information to analyze our symptoms? Can we read laboratory results and radiology scans as well as our doctors? Yes, we should have all that information because it is our’s and valuable in disease management, but having information at hand is not tantamount to knowing medicine.

 

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In Stunning Reversal, Unnecessary “Preventive” Mastectomies Are Surging in Young White Women with Insurance

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Breast anatomy. Source: Wikimedia Commons.

Breast anatomy. Source: Wikimedia Commons.

I remember the first time that I heard about an unexpected rise in unnecessary mastectomies in young white women, who were privately insured. About five years ago, I was at the largest cancer meeting of the year, the annual meeting of the American Society of Clinical Oncology. Speakers raised the issue; they’d speculate why; and within minutes, the speaker and the entire audience looked crestfallen and helpless.

For many, it was a devastating turnaround. The women’s health movement and progressive forces in medicine had vigorously fought for breast-conserving surgery because the best science long ago proved that total mastectomies were overkill. Not only has breast-conserving surgery been tested rigorously against total mastectomies, but the results have consistently shown, that for women with early breast cancer, there is no survival advantage to having more aggressive surgery. Compelling proof that breast-conserving surgery AKA lumpectomy and radiation should be the standard of care for early breast cancers goes back until about 1990. Simply put, for women with early breast cancers, if both breasts are removed, they will not reduce their chance of getting cancer again, nor will they improve their survival any more than if they had had a minimally invasive lumpectomy followed by radiation. Additionally, unnecessary hysterectomies were also questioned and they are far less common today.

In the larger picture, organ preservation is a big part of medicine today, and often, for very good reasons. For example, for many early-stage kidney cancers, taking the entire kidney out is now considered excessive and harmful because it elevates a patients’ risk for chronic kidney disease and cardiovascular disease.  Clinical practice guidelines call for reviewing each kidney cancer case with an eye towards which people have organ-confined cancers,  can safely have a limited part of their kidney removed, and avoid chronic devastating conditions.

I’ve seen friends, daughters of friends, siblings of friends, and moms die from breast cancer. But I’ve also seen far more women in recent years who have had lumpectomy and radiation, get regular monitoring, who do quite well. Also breast cancer treatment has changed dramatically so that outcomes from decades ago may not be comparable to today. I don’t blame any woman for thinking that a mastectomy is what she wants after she hears a breast cancer diagnosis. Intuitively, a woman might think, the more removed, the better.  However, it is not straightforward. I am also sure that I would become terrified.

Susan Love, MD, Chief Visionary Officer, Dr. Susan Love Research Foundation, Santa Monica, CA,  describes how fraught with fear deciding what to do is. “This is the one of the only decisions that women with breast cancer will get to make. Women who hear ‘cancer’ think it is a potentially fatal disease. You just don’t think rationally.” Love also can understand why many women think that “the more aggressive the surgery, the better.”

High-risk women could benefit from more aggressive surgery, but they are not your average woman. For women who have mutations in the BRCA genes or a strong family history of first-degree relatives with breast, all of which can be sorted out with cancer prediction models, this story does not apply. Angelina Jolie was one example of a woman who had an 80% of developing breast cancer. For women with these risks, a preventive mastectomy and removal of ovaries will make sense.  Exactly what constitutes high risk will be addressed in a subsequent post.

Eleanor Walker, MD, Director of Radiation Oncology at Henry Ford Health System in Detroit, MI, stresses that taking time with patients is critical. “Young women can expect a healthy lifetime of at least 50 years. Lack of knowledge has to be addressed. There are family issues to address.”

Walker described an “options clinic” at Henry Ford for women who are newly diagnosed. “We need a lot of education for patients to understand that whatever they do, there are no guarantees.” Although reports have been out that address getting a second breast cancer in the unaffected breast, Walker points out: “In 10 to 20 years, if there is a recurrence, it is most likely to be in the same breast. Only the highest risk women are likely to develop breast cancer in the opposite breast.”

The Latest Research and Public Policies

What cancer doctors could only hint at a few years ago came into stark view with the publication Sept. 3 of a large study of double mastectomies in California women between 1998 and 2011.  Using data from California’s Cancer Registry, which collects data on all the patients diagnosed with cancers in California since 1998, investigators provided a wake-up call on the jump in double mastectomies:

  • Of nearly 200,000 women diagnosed with breast cancer since 1998, in each year, between 1998 and 2011, double mastectomies rose by about 14%.
  • Women who had a double mastectomy had no better survival rate than those who had the more conservative lumpectomy.
  • The proportion of double mastectomies in women among women with a diagnosis of breast cancer soared from 2% in all patients with a breast cancer diagnosis in 1998 to 12.3% in 2011.
  • For women under age 40, just 3.6% had both breasts removed in 1998, but this jumped to 33% in 2011.
  • Women who had a single mastectomy (just one breast removed) had slightly worse survival than women who had lumpectomies or double mastectomies.
  • Double mastectomies were more common in National Cancer Institute-designated facilities.

Far less clear are who chooses total breast reconstruction, either at the same time as the mastectomy, or delayed, and who do not. “Women need to know that the Women’s Health and Cancer Rights Act passed in 1998, provides protections for women who want total breast reconstruction,” said Otis Brawley, MD, Chief Medical and Scientific Officer of the American Cancer Society.

Women's Health and Cancer Rights Act of 1998

Women’s Health and Cancer Rights Act of 1998

That includes not only total breast reconstruction on the affected breast, but surgery and reconstruction of the other breast to produce a symmetrical appearance, prostheses and physical complications at all stages of mastectomy, including lymphedemas. However, for certain demographics, practitioners and linkage systems are not in place.

Brawley pointed out that  80% of plastic surgeons do not take Medicaid or the uninsured. In fact, perhaps in large part because of this, at some hospitals serving poor, minority women, total breast reconstruction is not even discussed.

However, young, insured, white women are more likely to get their cancer care at an NCI-designated facility and they will  find it much easier to get total reconstructive surgery, according to Love . “It’s far easier to coordinate care if the general surgeon is linked to a plastic surgery team so that if a woman wanted breast reconstruction, they can work together,” she said.

In one sense, there may be a silver lining in terms of how black women fare in some aspects of breast cancer care. Otis Brawley,  commented:

“When something is a new fad [for example, getting unnecessary double mastectomies], the poor and disenfranchised always end up being better off. It was like that when women were going for bone marrow transplants.”

Bone marrow transplants subsequently proved useless.

On Sept. 4, a team of University of Chicago researchers presented a paper at the American Society of Clinical Oncology’s Breast Cancer Symposium 2014  in San Francisco that provided more insight. They surveyed women who had chosen a double mastectomy before surgery, finding that those women were far more worried about recurrence, had higher anxiety levels, and less knowledge than those not considering it. Many stated that the diagnosis “sent them into a daze.”

I am Not My Breast

Besides fear, anxiety, or poor information contributing to health decisions, I can see why movements are afoot with the MO “I am NOT my breast.” I too don’t want to be objectified. As more news surfaces on an epidemic in rapes, anger about rape justice escalates. In a hostile sexist climate, it makes sense that some women might say the heck with my breasts. They might be more trustful of their instincts and their allies than outside authorities. For example, in Atlanta, African-American women have joined forces to create a group called Bold and Breastless. 

 Coming Full Circle

In an ironic twist, the trend towards breast-conserving surgery goes back to some of the nation’s first women’s health advocates, including Our Bodies, Ourselves, as well as many other grassroots women’s health groups around the country, and advocates, especially Rose Kushner. In 1975, Kushner wrote the landmark book and bestseller Why Me: What Every Woman Should Know About Breast Cancer to Save Her Life. (It was originally titled Breast Cancer: A Personal History and Investigative Report.) Kushner was one of the strongest voices against disfiguring mastectomies.

Taken together, since the 1970s, women’s health advocates have argued against violating women unnecessarily, questioning not only unnecessary mastectomies, but hysterectomies, the safety of the first birth control pills, and much more. Self-education and getting the best information to women have been part and parcel of the women’s health movement for decades. Inside the medical profession, progressive individuals continue to question unnecessarily harming women and pressing for science to guide practice.

I don’t know whether and when the trend towards unnecessary preventive mastectomies among young white women with insurance will change. Maybe each generation has to see for themselves what makes sense.

I will say this: like it or not, insurers have demonstrated increasing concern with eliminating excess procedures that offer limited or no proven health benefit. Double mastectomies are costly and studies have consistently favored breast-conserving surgeries for early noninvasive breast cancers. If insurers go after it, public debate will pit a rising group of outspoken women up against the medical establishment and insurers. Sorting this out will not be easy.

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Next on PatientPOV: Celebrity Breast Cancer War Stories

Within the past two years, three celebrities have gone public with their breast cancer stories: Good Morning America anchor Amy Robach, the comedian Wanda Sykes, and actress and director Angelina Jolie. What have they contributed?

 

 

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A Second Look at the European Randomised Study Of
Screening For Prostate Cancer

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Last week, The Lancet published 13-year follow-up results from the European Randomised study of Screening for Prostate Cancer (ERSPC), an international trial of PSA testing in seven countries (the Netherlands, Belgium, Sweden, Finland, Italy, Spain, and Switzerland). (Unfortunately, the complete study is behind a paywall.) The core finding reported was that after 13 years of follow-up, prostate cancer screening cuts deaths by about 20%. However, the investigators concluded that screening should be rejected pending “further quantification of harms,” with their elucidation “a prerequisite for the introduction of population-based screening.” Fair enough.

Even though the results were covered by more than 100 news outlets internationally, absent from the many reports were critical questions about the trial that speak to the trustworthiness of the findings. Study limitations were also given short shrift by the trial investigators and the editorialists.

In proceeding with this story, I learned first hand that even though outsiders reviewing the study pinpointed flaws, they placed near the top praise for the study’s conclusion, that screening be looked at skeptically, based on the knowledge base today.

Here, I take the liberty of sharing the pitfalls, believing that for patients to view screening without bias, honest communication, however complicated, is imperative.

What I learned about the trial sure startled me.

Just Two of Seven Countries Showed a Screening Benefit

Reviewing the trial for PatientPOV.org, Anthony Zietman MD, immediate Past President of the American Society for Radiation Oncology, and Professor of Radiation Oncology at Harvard Medical School, raised this question:

“An unexplained aspect of this multinational study is that the “benefits” of screening were seen in Holland and Sweden, but not in any of the other half dozen European nations contributing patients. Explain that if you can! I know I can’t.”

In an email, Peter Albertsen, MD, Professor of Surgery, University of Connecticut Health Center, Farmington, CT, explained it this way:

“Swedes have a very high incidence of prostate cancer –higher than the rest of Europe and equivalent to US African-Americans. Screening works better the higher the incidence of disease. The Holland study was barely statistically significant. Some have argued that the screen detected cases were treated more aggressively. The big question is Finland. They contributed the most patients, but screening made no difference. They took a population-based approach, rather than Holland that invited men to participate before enrolling them in the study. In all the other countries, the sample sizes were too small. Therefore there was insufficient statistical power.”

American Cancer Society Chief Medical Officer Otis Brawley, MD, amplified issues surrounding the findings in Finland. Like Albertsen, he pointed out that the Finnish component of the trial was negative. “It was the largest part of the trial and Finns have a high rate of prostate cancer as well.”

In addition to the pitfalls noticed above, Brawley said:

Sweden had an unusual non-straightforward randomization that biases toward a finding that screening works. The control group was never informed that they were in a clinical trial. They randomized census rolls. This means that men with metastatic disease at the time of randomization on the screen arm got to opt out, while men in the control arm did not.

Moreover, Brawley questioned whether those in the control arm had the same access to quality of care as the screened arm:

“The screened individuals were treated by experts running the study. The control group got whatever was in the community.”

Brawley considers some of the issues in the trial so troubling that he has called for independent external review of the trial.

Praise for Investigators Opposition to Screening

Opposition to population-based screening has grown in recent years and commentators in this story praised the study’s conclusion as well. In an email, Brawley wrote:

“I agree with that [the conclusion] and it’s consistent with a number of current recommendations, including the American Cancer Society and the US Preventive Services Task Force, which are against ROUTINE screening, but speak positively toward true informed decision-making. The benefits are possible, but are small if they exist, as several studies have shown.”

Albertsen added:

“This study and the recent SPG-4 [Scandinavian Prostate Group 4] results are actually quite consistent.  PSA testing does find some prostate cancers that are eventually fatal.  Radical prostatectomy does cure some prostate cancers that would have been fatal. But in the process of detecting these cancer, a large proportion will not progress, hence overtreatment occurs. In addition, when doctors find very aggressive cancers, they are especially lethal and treatment does not alter outcome. So screening works for some cancers, but not for others.  Now the problem is how to tell these two groups apart.”

Nonetheless, rejection of prostate cancer screening remains a bitter pill for many Americans to swallow. Some question whether they are trading a risk for death from cancer with harms that they think simply don’t compare.

There’s plenty more that has to be done if doctors and patients are going to get on the same page. A lot of work is underway to engage patients, share evidence-based data, and ratchet up understanding of the benefits, risks, and uncertainties.

These are complex issues and they don’t fit well into a simple slogan or headline. In writing posts like this, sharing what I hear patients saying about these issues, I hope to help bridge some of the gaps in understanding, further best care, and set in motion making informed choices.

NOTE: This post is the first of a series. There is a lot to discuss and I am interested in hearing from patients interested in these issues. I’ll try to get the next installment out before my summer vacation, but it may lapse until after Labor Day.

I invite you to comment below, tweet the link to the story, ask me about this on twitter @lauranewmanny, and by all means, like my Facebook page and discuss this there, and/or in comments below . I’d like to engage you all in further discussion.

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4 Short Summer Reads: Concussion in Girls, Adult Diapers,
Gay Conversion Therapy with Electric Shock, and Chronic Pain

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We’re halfway through the summer, when perhaps you have more time for reading and considering new ideas. I want to draw readers’ attention to four issues that sharpen the focus on overlooked population groups that should be part and parcel of patient-centered research and care. Presented in no particular rank order, I think that they are all worth thinking about:

1. Concussions in girls’ sports. Last fall, I wrote about concussions in school sports, sometimes resulting in long-term head injury. I asked whether culture change, involving taking kids off the field, teaching parents and coaches how to recognize concussions, and getting independent medical evaluations will be accepted and help avert long-term traumatic brain injury. Unfortunately, the story was focused largely on boys and male professional athletes. After I wrote the story, a reader approached me privately and said that I was remiss in excluding girls. Soccer is the leading sport for girls’ head injuries.

I was pleased to see a commentary in JAMA Pediatrics this week by Cynthia LaBella, MD, on concussion and female middle school athletes. The piece reviews a prospective cohort study of middle school female soccer players between March 2008 and May 2012 by John W. O’Kane and others, from the University of Washington Seattle. Concussions in middle school are studied less frequently and girls and women in sports are still not that visible in mass media despite the passage of Title IX, which aimed to end discrimination and build inclusiveness for females in sports, in 1972, more than 50 years ago.

Notably, the Washington state analysis found that:

  • younger girls are more vulnerable than older ones;
  • heading causes most of the concussions;
  • nearly 60% of girls played despite symptoms, and
  • less than half sought medical attention.
CDC-recommended Heads-Up app, in IOS and Android.

CDC-recommended Heads-Up app, in IOS and Android.

What is especially striking is that these figures follow Washington becoming the first state to pass concussion legislation in school. Clearly, more concussion awareness and early diagnosis is warranted, according to LaBella. But, in my opinion, for real culture change, we may need to look at carrot-and-stick incentives. Anecdotal data tells me that parents and coaches are reluctant to pull kids out of sports.

Adult diaper use now supplants baby diapers. Large population shifts are afoot, as this Wall Street Journal article nicely highlights, by illuminating a major shift in sales of  diapers. Adult diaper sales now outpace sales of baby diapers (up 20% versus down 8%. respectively). This parallels a drop and leveling off of the birth rate and boomers aging. Marketers are focusing on this booming 65+ market. I’d love to see this aging population actively engaged and accommodated in patient-centered research and practice. Please send me information on efforts to engage these patients.

Using electric shock for gay conversion therapy.

Bans on gay conversion therapy in the United States are proliferating at last, which is good news. Yet many other countries remain in the dark ages.

 

Electroconvulsive therapy (ECT), National Institutes of Mental Health, NIH.

Electroconvulsive therapy (ECT), National Institutes of Mental Health, NIH.

A shocking story in Friday’s Washington Post reports that gay activists in China are suing to stop electric shock therapy to “cure homosexuality.” Homosexuality is closeted in much of China. A quote from the Chongqing Center, which employs electric shock points to this attitude:

“The Chongqing center explains its views of homosexuality on its Web site: ‘Any type of homosexuality is not really homosexuality. It’s just a wrong way of sexual release. They just need to be guided.”

Taking a strong stand against the violence against GLBT groups around the world is imperative if this is to stop.

Stigmatizing, humiliating reactions to chronic pain. How do we balance the chronic pain against an epidemic of opioid abuse? Not very well, writes Janice Lynn Schuster, in “Down the Rabbit Hole: A Chronic Pain Sufferer Navigates the Maze of Opioid Abuse.”  Schuster describes how bothersome pain in her tongue, felt as throbbing, burning, and pain upon eating and speaking, led to a tongue surgery that made her pain far worse. Schuster questions herself for not reviewing the outcomes online with this surgery, but the bulk of the piece deals with her frustrating search for pain relief without judgment.

It’s a compelling read, pointing to a labyrinth of pain management, difficulty returning pain pills that didn’t work, hurdles filling essential prescriptions, and a “confused national response to opioids.” “Waiting for better days,” she remains “furious” at the stigmatizing and humiliating responses she has gotten from doctors and pharmacists. “Surely,” she concludes, “for all our yearning to understand both [pain itself and the experience of seeking treatment for the pain], we can find better ways to ease the suffering and devise treatments and strategies that do more good than harm and that do not shame and stigmatize those who suffer.”

 

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At Last, Sexual Orientation Question is Added
To CDC’s Youth Risk Factor Behavior Survey

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On the heels of LGBT Pride events last weekend, PatientPOV.org takes a look at efforts to include LGBT individuals in health services research, health planning, and systems of care. Efforts to reduce disparities did not end with the defeat of the Defense of Marriage Act, bans on gay conversion therapy, and transgender individuals coming into focus –all very wonderful events that occurred in the past year. Much more needs to be done to build a more inclusive health care system and improve the health and well-being of LGBT individuals. This post is the first in a series that take up critically important work now underway that hopefully will reduce health disparities for LGBT-Q individuals. Today’s post focuses on improving the science, getting good data on the health and risk status of lesbian and gay adolescents.

At first blush, data may seem like a deadly topic for many readers, but collecting health data forms the basis for determining and reducing health risks, funding prevention and intervention programs, and ultimately improving the health of groups under study.

In early June, the Centers for Disease Control and Prevention finally agreed to incorporate survey questions on sexual orientation (LGB) into its standard annual Youth Risk Factor Behavior Survey. Advocates see this as a tremendous advance because sexual orientation has never been included routinely in many national health surveys paid for by our tax dollars.

The Youth Risk Factor Behavior Survey monitors six types of health risk behaviors that contribute to the leading causes of death and disability among youth: behaviors contributing to unintentional injuries and violence; behaviors that contribute to unintended pregnancy and sexually transmitted diseases, including HIV; alcohol and other drug use; tobacco use; dietary behavior; and inadequate physical behavior.

Why is this important?

Caitlin Ryan, Director of the Family Acceptance Project, San Francisco State University, San Francisco, CA, put this change into perspective.  “It took nearly 60 years of research on sexual orientation plus years of advocacy and the Institute of Medicine Report on LGBT Health,” she said. “We are past the tipping point. I think of the difference it will make to have accurate data on health risks for LGB youth and hopefully soon for transgender youth in these jurisdictions.” (Many advocates believe that asking about transgender gender identity is so new that it is premature to incorporate).

“Up until now, it was too politically challenging to ask about sexual orientation, but the need to ask these questions is huge,” said Donna Futterman, MD, Director of Adolescent AIDS Program, and Professor of Pediatrics, at Children’s Hospital of Montefiore, Bronx, NY. “We need to include sexual orientation because bullying, violence, suicide, homelessness, HIV, and sexually transmitted infections are higher in LGBT groups. Getting real numbers is important in ramping up prevention and intervention programs.”

homeless gay youthPatrick Paschall, National Gay and Lesbian Task Force, praised the change in the Youth Risk Factor Behavior Survey: “Adding a sexual orientation question to the Youth Risk Factor Behavior Survey is a huge step toward identifying and ultimately eliminating disparities LGBT youth face,” he said. “This will yield a level of data that we have not ever seen. Perhaps more importantly, this question will now appear on the standard set of survey questions for the foreseeable future, producing updated youth risk data annually.  The significance of this step will not be fully realized until the data is released in 2016, but make no mistake – this will change the way our society and the government addresses the needs of LGBT youth for decades to come.”

Look at it as a parallel to “don’t ask, don’t tell.” If you don’t ask about sexual orientation, the people you are surveying don’t exist, they are not included in society. It’s a notion that needs to be buried. Here’s hoping that more inclusive changes in health survey data continue to move forward.

 

 

 

 

 

 

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7 Disruptive Ways to Celebrate Mothers’ Day

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It’s about time that we looked at Mothers Day expansively and rocked the boat. Lots of positive vibes could be set in motion. Some of my thoughts:

1.     Press for action and donate to organizations devoted to preventing unnecessary maternal deaths around the world and in the United States.

 Every Mother Counts is worthy of your donation, as are numerous other organizations, including Samahope, WeActx, the International Planned Parenthood Foundation, Partners in Health, and undoubtedly many more. India and Nigeria account for more than one-third of the world’s reported maternal deaths, but maternal deaths are far too high in many countries and are rising in the United States.

Expedited training of skilled birth attendants, access to emergency obstetrical care, ultrasound, promotion of prenatal care, and access to safe abortion are urgently needed. According to the World Health Organizations, the major complications that account for 80% of all maternal deaths are:severe bleeding (mostly bleeding after childbirth); infections (usually after childbirth); high blood pressure during pregnancy (pre-eclampsia and eclampsia); and unsafe abortion.

In the United States, maternal death rates are rising. Efforts to lower maternal deaths need to be comprehensive and target risk factors and environmental barriers to care. State differences, shown here, are striking. Disparities by race and class are also important. In the United States, since 2011, the Maternal Health Accountability Act of 2011 has been floating around Washington. It would establish accountability, fight maternal health disparities, and combat severe maternal complications. Ask your representative to co-sponsor the bill and get it through.

2.     Buy a copy of Trans Bodies, Trans Selves for your mom or a friend’s mom.

This book, compared to the landmark Our Bodies, Ourselves, looks like it could radically inform and transform views on transgender people. I have seen excerpts and I am very impressed. The Washington Post review is extremely positive. Let’s not let transgender equality lag behind. Think outside of the box: don’t forget that trans moms are out there.

3. Press your elected officials for a national long-term care policy for our moms and dads.

Please, don’t turn the page here. The safety net is failing our aging moms—and dads for that matter—and yes the population is getting older. Think about it: are you going to be able to support your parents? Will they be able to support themselves? (I won’t bore you with the obvious here.) We need a comprehensive, national long term care policy.

Older Women’s League National Mothers Day Report 2014, released Friday, points out:

“The American public still lacks understanding about long-term care; where it occurs, how to plan for it, and why comprehensive, thoughtful, and rational long-term care policy is of importance to all Americans.” 

The Report can help you get up to speed on how we could create and sustain a long-term care system that permits Americans to remain financially solvent, independent, and with a decent quality of life.

4.     Move beyond thinking about mother’s day with a narrow compass. Single moms, lesbian, gay, and transgender moms, and moms with HIV, are just some of the groups overlooked in traditional mother’s day celebrations. Shake up the usual mother’s day celebrations by including them.

 5.     Donate or volunteer to stop restrictions to abortion access in the United States and around the world. Every pregnant woman cannot go through a pregnancy.

A recent article by @irincarmon addressed the end of abortion access in the South. Of course, we know that this is far from the only restriction out there. Consider donating to abortion access projects. Here are some ideas: the National Network of Abortion Funds  A few others that you might want to consider are listed here: Texas , North Carolina, and in Kansas, the SouthWinds Women’s Center, where George Tiller worked.

Globally, access to safe abortion –all too often– does not exist. I addressed the outrageous roadblocks that Beatriz faced in El Salvador last year in getting access to abortion. Her story is emblematic of countries that have been firmly opposed to abortion as a basic human right. Donate to the groups linked to above, which can save women’s lives.

6.     Keep the pressure up to #bringbackour girls every day.

Take the pressure to your elected officials, to twitter, to Facebook. Stay informed. I wish I had a solution that would bring these girls back. If you have ideas, please put them in the comments.

7.     Make a yearlong commitment to the fight for equity and women’s health by volunteering in campaigns or donating what you can afford. Many organizations are happy to get donations as small as $5 a month.

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Hope that you take time to comment below!

 …and now for a moment of shameless self promotion! There’s been a hiatus on PatientPOV. Writing about ways to disrupt healthcare, end inequality, and build social change is my first love, but I cannot afford to do work like this without $ support. Contact me @lauranewmanny for paid writing opportunities or support this blog with a Paypal donation above.

 

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Dying From Dirt

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Photo: A clean sink. Flickr, Creative Commons. Slash mark superimposed on photo.

Photo: A clean sink. Flickr, Creative Commons. Slash mark superimposed on photo.

Many years ago, when my father was working his way through psychiatric diagnoses, my mother-in-law, whom I’ll call “J,” said, “If I ever get like that, take me out back and shoot me.”

She was kidding, of course, but not really. And now the time has come when she’s no longer making fully rational decisions. Yet the situation is confusing.

“J” is 86 years old. She was a 2-pack-a-day smoker, since her mid-twenties, until a mild heart attack scared her a few years ago and she finally quit. But the damage had been done. COPD. Heart failure. Spinal stenosis. Atherosclerosis. Peripheral vascular disease. Hypertension. Most of the conditions are controllable with meds, and when asked at medical exams about her illnesses, she claims not to have any. About a year ago she started oxygen supplementation at night. Soon she was reading again, aware of the news, and the repetitions of the stories about how bratty my husband was as a boy noticeably declined.

Now she needs oxygen 24/7. I’d been saying this for many months, being the person who schleps her to most medical appointments. I’d have to ask the cardiologist to check her oxygen saturation – he a competent doc and seemingly nice man who nonetheless harbors an ill-disguised attitude that someone with 2 X chromosomes (me) couldn’t possibly know anything. Her pulse ox would be ok after taking a few steps in the hallway after having sat in the waiting room for 30 minutes. But lately I’ve noticed she can’t go 4 steps without becoming completely winded.

In recent weeks, as the exhaustion and muscle pain worsened, I tried contacting her primary care physician several times, and was ignored. I had to actually go to the doctor’s office to read the echocardiogram myself because the nurse could not interpret it. Well, last week, the PCP finally examined J at the assisted living facility and called me, alarmed. She related everything I’d been trying to tell her for years.

J has selective hearing in a medical setting. She goes to a doctor’s appointment with a set phrase – “I’m in good health,” for example – and manipulates the conversation until the doc utters something that seems to agree. At her first appointment with a nephrologist about 18 months ago, however, the young doctor would not be cowed. He explained half a dozen ways that she was in kidney failure. But back at assisted living, she announced to the gang, “The doc gave me a clean bill of health!

And so a few days ago, after the PCP’s found a pulse ox of 88 and ordered assisted bathing at least thrice weekly (I’ll get to that in a minute), we stopped in for a visit. When my husband brought up the oxygen issue, J went crazy.

“They decided it was a mistake, I don’t need it.”

Who is ‘they?’

“The nurse.”

I doubted that the nurse at the assisted living facility was going to counter a doctor’s order for oxygen. But that’s the least of the problems.

J may die of being dirty.

When the choking haze of cigarette smoke receded in the aftermath of the heart attack that forced the quitting, when J was still living alone, a distinctive odor emerged. She wasn’t washing. Or wiping. Today her unit at the assisted living facility smells like a large mammal died and decayed in her living room. Recurrent fungal infections ravage the folds of flesh that she can’t reach. People have commented on the pervasive smell since she arrived two years ago, but nothing was ever done, I think because she is in financial control. Last week the PCP, after instructing us to insist on assisted bathing since we pay the bills, was shocked to learn this was not the case.

If J does not go on constant supplemental oxygen and get herself cleaned up on a regular basis to control the fungal and other infections, the PCP told me, she wouldn’t last a year. She didn’t mean last a year until she was moved to a nursing home. She meant last a year, period.

Like the healthy kidney conclusion, J denies both problems. Her inability to smell her own stink is yet another consequence of long-term smoking, her respiratory cilia having long since vanished. And the lack of oxygen may be impairing her thinking. If J is refusing the round-the-clock oxygen, she will certainly refuse someone cleaning the extended microbiome from her various nooks and crannies on a regular basis, which she will have to pay for.

So what do we do?

When my father was close to death from paranoid depression, my sister and I, not being truly informed, refused electroconvulsive treatment. An ethics committee at the medical center intervened and overruled us – and it gave him two more years. Can a PCP do the insisting for us in the present situation?

I’d support J’s decision to forego something horribly invasive or painful – chemo, coronary bypass, or dialysis. But supplemental oxygen and bathing? I understand that these interventions represent a loss of control, and perhaps an acknowledgment that she has been in deep denial of medical matters. But if we do not, somehow, insist, in an attempt to honor her autonomy, she may die of too much dirt and too little oxygen.

Advice welcome!

This post was written by an anonymous contributor to PatientPOV.org.

 

 

 

 

 

 

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5 Fun Facts About the New York Health Insurance Marketplace AKA The New York State of Health

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776px-Map_of_New_York_NAI had the pleasure of hearing Elizabeth R. Benjamin, MSPH, JD, Vice President, Health Initiatives, Community Service Society, of New York, at a presentation she gave on the new insurance marketplace for the New York Chapter of the Association of Healthcare Journalists tonight.

Sorting through the changes is daunting, but I thought 5 facts she discussed show what might set New York State apart from many other states:

  1. Thus far, New York State has enrolled approximately one-third of the nation’s enrollees. According to Benjamin, 100,881 New Yorkers have enrolled of approximately 300,000 across the United States.
  2. New Yorkers have been accustomed to choice in health coverage, but on one issue, out of network coverage, none is allowed. Advocates are pressing to change that.
  3. As the marketplace launches, premiums in New York State have dropped by 53%.
  4. New York State has a more streamlined approach to getting financial help than many other states. If you are eligible for financial help, the marketplace will determine your eligibility early in the enrollment process. You do not need to apply for financial help separately.
  5. As of Dec. 12, two carriers (United and Empire) had not invoiced people who signed up, but both promise to bill people next week. Given that Dec. 31 is the deadline for paying your invoice, it’s making lots of people jumpy.

Additional Resources

If you are still looking to enroll, many resources are available, including navigators to help you select your plan. Check out these resources:

New York State of Health: www.nystateofhealth.ny.gov

Community Health Advocates: www.communityhealthadvocates.org

            For enrollment help, call 1-888-614-5400  tollfree.

Email: enroll@cssmy.org

Small Business Assistance Program: www.sbapny.org

Health Care for All New York: www.hcfany.org

You can also keep informed about the law, timetable, and changes here.

Find coverage: www.healthcare.gov

It’s been a bumpy ride. Do you think the marketplace will work in New York? Have your say in the comments below.

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When You Read that Radiology Report, Are You Worried, Getting Unnecessarily Primed for More Consults and Tests?

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Diana Miglioretti, PhD, the lead researcher, standing next to a CT scanner. Photo credit: UC Davis Health System, Sacramento, CA.

Diana Miglioretti, PhD, standing next to a CT scanner. Photo credit: UC Davis Health System, Sacramento, CA.

A few years ago, I watched a relative poring over her father’s chest x-ray report hanging on every word. He was 89. Everything sounded scary and worthy of worry.  It’s bad enough when patients go for these tests, the machines alone are huge and enveloping. So you are almost set up to worry as soon as you have the study done.

There’s plenty wrong with radiology reports that can push you to fear the worst. According to Dushyant V. Sahanyi, MD, associate professor of radiology at Harvard Medical School, in fact, patients are scared far more than they should be in many cases. Dr. Sahani told Patient POV about a high proportion of patients coming to him for a second opinion who thought they had terminal diseases, based on their initial radiology reports. It turned out that all but one had findings of no consequence to their health. Dr. Sahani said:

“These patients thought that they were going to die because the language used in the reports was so frightening. When I reviewed and discussed their reports with them, many started to cry because they said that they never expected to hear such good news.” – Dushanyi V. Sahani, MD, Director of CT Imaging, and radiologist in the Division of Abdominal Imaging and Intervention at Massachusetts General Hospital in Boston.

Radiology Reports Use Misleading Language

One problem is that radiology reports are filled with annotations that are loaded and inconsequential to patients’ health and wellbeing. Reports flag all sorts of things that are nothing more than:

  • Misleading medical jargon;
  • A part of the normal aging process;
  • Incidental findings that mean nothing is wrong;
  • Benign findings –(having little or no detrimental effect);
  • Indeterminate lesions.

The terminology varies from radiology department to department, explained Dr. Sahani, but going forward, “radiologists need to work at more clear communication in these reports.” It’s not just patients that are baffled by the reports; sometimes referring physicians can’t make heads or tails of them or they don’t address the precise reason why the doctor ordered the study or amplify the most clinically significant findings. Instead, the important findings are buried in the reports.

Introducing Reform

Dr. Sahani and many other radiologists are working on changing the way reports are written. The benefits are clear: patients won’t be unnecessarily scared to death a lot of the time and won’t begin a cascade of unnecessary consults and more tests. Referring doctors would also benefit: they could get information they need that is not mired in radiology lingo of no consequence.

Some ideas that Dr. Sahani and other radiologists suggest include:

  1. Putting the most important finding clinically at the top of the report in plain English.
  2. If there is something urgent in the report –even not having anything to do with why the doctor ordered it—put it at the front of the report.
  3. Stop inserting excess information that is not clinically relevant.  That runs the gamut of amplifying findings related to aging, including repetitious ways of describing the same finding, or factoids only of interest for a radiology textbook.
  4. If additional imaging could help uncover what is wrong, specify why so that the referring doctor can explain it to the patient. Without it, it looks like the radiologist is looking to do an unnecessary procedure.
  5. If something is especially complex, radiologists should call or email the referring physician.
  6. Radiologists should also consider leaving a contact number for further questions.

There’s a silver lining in radiologists opening up about misleading radiology reports. Radiologists like Dr. Sahani and many others across the country are spearheading campaigns for more standardized radiology reports and more clear communication. It may be difficult to achieve consensus on what belongs in a report or what should be excluded, but it’s a good first step.

Pathologizing Not Unique to Radiology

Meanwhile, patients reading radiology reports should recognize that the reports may not be as alarming as they might seem on first glance.  We are a long ways away from not pathologizing every finding in medicine. Patients need to maintain a high level of  skepticism.

The same is often true for reading urine and blood results. Something may be outside the boundaries of “normal” or the “reference range,” but for a specific patient, it may be of little consequence.

 

 

 

 

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Concussions in School Sports: Is Culture Change Possible?

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About a month ago, I stumbled across a news story in the Chicago Tribune about Drew Williams, a Lane Tech High School football player collapsing unexpectedly on the football field during a game. Ever since, he has been in a coma. Drew had no apparent collision during the game and that shocked and troubled bystanders. After the incident, a father of another boy on the team told his son that it was just fine if he didn’t want to play in the last few games this year.

Drew was taken away on a stretcher and brought to the hospital by ambulance. He was hospitalized until this week, when a transfer to a rehabilitation facility was authorized. However, shortly after his transfer, he suffered a setback and was rushed to a hospital because of a serious infection. His family asks for prayers and hopes to raise funds for him to pull through on a Facebook page dedicated to “this marathon we call recovery.

Could Drew’s injury have been prevented?  I don’t know. I certainly don’t feel comfortable bothering his family for an interview now, in what is clearly a very difficult time. But I read the story shortly after I attended a meeting on concussion prevention in school sports.  I am glad that concussion outcomes and prevention are getting the attention that they deserve.

For boys, the most worrisome sports are football, ice hockey, lacrosse, wrestling, and soccer. For girls, soccer, lacrosse, and basketball account for the most head injuries.

Recent reports of suicide, traumatic brain encephalopathy, and violence in NFL players and other athletes are troubling. In the report commissioned by the Institute of Medicine and National Research Council released Oct. 30, the authors call attention to “changing the culture.” The authors write:

“Too many times the committee read or heard first-person accounts of young athletes being encouraged by coaches or peers to “play through it.” This attitude is an insidious influence that can cause athletes to feel that they should jeopardize their own individual health as a sign of commitment to their teams.”-     p.6, Sports-Related Concussions in Youth: Improving the Science, Changing the Culture, National Academy of Sciences, Oct. 2013, prepublication copy.

Why is There Not More of a Public Outcry?

When you take a look at reports like the Institute of Medicine/National Research Council and recent peer-reviewed publications on outcomes of concussion, a huge knowledge gap is evident, but what is known is not comforting. Some of the more disconcerting issues to think about are as follows:

  1. Head injuries are invisible to observers beyond perhaps watching initial impact. Brain swelling and bleeding won’t be obvious without medical evaluations.  Problems with memory and processing speed may only be evident if objective testing is done.
  2. Research into the effects on the brain after concussions in youth, and differences between boys and girls, and different ages have only recently begun. So play continues with incomplete knowledge.
  3. After one concussion, athletes may be at greater risk for more severe concussions and take longer to recover. Not recovering from a concussion may be a key risk factor for another concussion, and increased severity of subsequent concussions.
  4. No sports figure has emerged yet that could serve as a role model for safety in sports. We have had suicides and violence in NFL active and retired players. This has propelled a research infrastructure, legislative changes, and some outreach.
  5. Only recently have we begun to track the course of recovery. Historically, questions about malingering unfairly stigmatized kids who were not recovering.
  6. Information on the race, ethnic background, or socioeconomic status of youth who sustain sports related concussions is not reported in studies, so we cannot determine if disparities exist. However, given that about 2/3 of NFL players are African-Americans and football injuries are the leading cause of head injuries for males, one wonders if a similar proportion of African-American youth is at increased risk of concussions.

There are some positive signs. In a subsequent post, I will point to legislative changes, research, and educational programs that could help reduce concussions.

 

 

 

 

 

 

 

 

 

 

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