Saturday, April 23, 2011

Frailty, fertility and the revelations of a bone scan | National Post

It was a routine bone density scan, part of a check-up. Over the head of the receptionist at the Montreal radiology lab was a poster of a pregnant woman holding a daisy over her belly. "Please tell us if you think you might be pregnant."
I'm sure the posters of the poster meant no offense. It was sound advice, after all. Skip the radiation if there is a fetus in your abdomen.
I was fairly sure there was none in mine. I had just returned from the Weill Cornell Medical Center in New York City, where Mike and I had signed on for in vitro fertilization treatment. I was going back to New York a few weeks later, to begin the process.
We'd been in in-vitro treatment at Montreal's Royal Victoria hospital for over a year before quitting the system in Quebec. Since last August, when the Quebec government became the first in Canada to cover the costs of in vitro fertilization, the navigation of an already complicated process seemed to become impossible, if only for the waiting lists. For some procedures, there were now waiting lists of 2,000. There was a doctor who told us that within the span of weeks, his patient load had increased three-fold, and that the ward hadn't been given the resources to prepare for the deluge, and that there was not a single extra staff member to deal with the new number of patients.
Last December, I took a bunch of hormones and arrived at the Royal Vic to undergo a long-awaited egg extraction. After extraction, my eggs would be combined with Mike's sperm for fertilization in a petri dish, and then the happy union would be reinserted a few days later. I sat in a gown, in one of a row of dirty peeling pink vinyl chairs, waiting to be wired up with an IV by a nurse. There were three women on either side of me. My chair was right in front of the doorway. People were coming in and out, stamping the snow off their winter boots. There was a thin curtain, half transparent polyester, half net. Every time I closed it, a passing nurse would open it while walking by. "We need to see you," one said. "So we remember you are here."
I have a prodigious and wildly varied medical file. I am thus experienced in the diverse humiliations of hospitals. I know it's good to bring an iPod with music that comforts. I know that in circumstances where one is wearing paper shower caps on both head and feet, novels are impossible. Glossy magazines, on the other hand, can feel like downright abuse. One might think: The whole world is drinking champagne in St. Barts wearing Pucci jumpsuits and I am here being stuck by a junior nurse who has no clue how to insert an IV catheter into an actual vein.
I brought poetry. Auden.
About suffering they were never wrong,
The Old Masters: how well they understood
Its human position; how it takes place
While someone else is eating or opening a window …
The nurse could not get the IV in.
How, when the aged are reverently, passionately waiting
For the miraculous birth, there always must be
Children who did not specially want it to happen …
When I was finally hooked up, Mike was sitting on the arm of the moulting pink recliner. In the operating room beyond, a woman was screaming her head off. I told Mike the IV was hurting; I couldn't even stand to look at it. He took a Kleenex and draped it over the bony, bruising place where the needle was going in. I told Mike I had a bad feeling about the procedure.
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A Family Doctor Looks to Retire, but Finds No One to Take Over -

"So there we are, miles from shore, fishing since 11 o'clock at night, and we haven't gotten one single bite until finally we gaff one that's about this big."

Dr. Ronald Sroka held his hands about three feet apart, and John Mayer — fishing buddy and patient — smiled from the examination table. Dr. Sroka shook his head, glanced at a wall clock and quickly put his stethoscope to his ears.

"All right, deep breaths," Dr. Sroka said. It was only 10 a.m., but Dr. Sroka was already behind schedule, with patients backed up in the waiting room like planes waiting to take off at La Guardia Airport. Too many stories; too little time.

"Talking too much is the kind of thing that gets me behind," Dr. Sroka said with a shrug. "But it's the only part of the job I like."

A former president of the Maryland State Medical Society, Dr. Sroka has practiced family medicine for 32 years in a small, red-brick building just six miles from his childhood home, treating fishing buddies, neighbors and even his elementary school principal much the way doctors have practiced medicine for centuries. He likes to chat, but with costs going up and reimbursements down, that extra time has hurt his income. So Dr. Sroka, 62, thought about retiring.

He tried to sell his once highly profitable practice. No luck. He tried giving it away. No luck.

Dr. Sroka's fate is emblematic of a transformation in American medicine. He once provided for nearly all of his patients' medical needs — stitching up the injured, directing care for the hospitalized and keeping vigil for the dying. But doctors like him are increasingly being replaced by teams of rotating doctors and nurses who do not know their patients nearly as well. A centuries-old intimacy between doctor and patient is being lost, and patients who visit the doctor are often kept guessing about who will appear in the white coat.

The share of solo practices among members of theAmerican Academy of Family Physicians fell to 18 percent by 2008 from 44 percent in 1986. And census figures show that in 2007, just 28 percent of doctors described themselves as self-employed, compared with 58 percent in 1970. Many of the provisions of the new health care law are likely to accelerate these trends.

"There's not going to be any of us left," Dr. Sroka said.

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Wednesday, April 20, 2011 | Social media’s leading physician voice

Hospital Impact

Hospital Impact is a blog written by and for hospital executives, physicians and other healthcare thought leaders.

Hospital Impact - The art of hospital blogging

We are behind the curve. I hate to admit that, but since we have not yet launched blogs for our hospitals, I have to face that fact. Many would say that launching a blog should be the first step in a social media plan. There's good reasoning behind that...

Blogs are important for hospitals for a myriad of reasons. First, with a dwindling media market and very few reporters who are dedicated to covering the health beat, a blog is a perfect way to tell your story the way you want it told. Want to highlight a patient success story? Put it on your blog. Want to help with recruitment for a hard-to-fill position in the hospital? Have a guest blogger explain a day in the life of working in that job. Want to talk about a hot news topic? Include a column by one of your doctors or nurses, thereby getting the word out to the public on what they need to know while positioning your doctor or nurse as the go-to expert on the subject. Want comments, feedback and engagement? Just ask for it. Photos, videos, podcasts? The more, the merrier!

It makes so much sense for a hospital to have a blog as an important part of its marketing efforts and brand loyalty. And it should definitely be considered a key tactic within an overall strategic marketing plan. As I began to develop plan to launch our own blogs, I of course had to do some research to see what other hospitals are doing. As always, I started at my go-to place, the blog of Ed Bennett, Found in Cache. (Seriously, I don't know what I would do without Ed!) He reports that as of January, 106 hospitals had a blog.

So what are they doing?

They're getting media placements from good blog posts.
In a recent webinar, Lee Aase of Mayo Clinic reported that sometimes blogs are incredibly helpful in getting a story into mainstream media, and he cited a 
video they shot with a professional baseball player who had a procedure done at Mayo. While traditional media were reluctant to do the story based on a pitch (pardon the pun), they later landed several placements in major media outlets. First, they had the baseball player's story, then they had a follow-up story of a woman who learned about the procedure through Twitter and Facebook, had the procedure, and met the player! The result was great stories featured in major media outlets. By the way, Mayo Clinic has a total of eight (yes, eight!) blogs, all designed for different audiences. That's more than I could even begin to manage, but nevertheless, amazing.

They're telling their patients' stories, and more.
The Children's Hospital Boston's 
Thrive blog is a wonderful mix of patient stories, a variety of medical topics and safety issues for kids. It has posts from the "blogger in residence," a formerBoston Globe reporter, as well as three physicians who blog regularly (one is the medical communications editor), and the hospital's director of family and patient communications. The blog features timely posts calling attention to major news stories featuring Children's Hospital Boston. The Thrive blog also includes a great section called One Patient's Story, devoted exclusively to patient stories told from the viewpoint of the bloggers, clinicians, or parents, and includes many photos.

Life in a Medical Center is the University of Maryland Medical Center's blog. It is designed for "patients, employees and friends of UMMC" and contains a nice mix of patient stories, health advice and feature articles on different programs. The bloggers are a diverse group of web writers from UMMC--clinicians, experts and patients themselves. At UMMC, they also use their blog to share great stories, and many are from the perspective of the patient or the parent of a young patient. Who wouldn't want to read a story about a 14-month old with a MRSA infection, told from the point of view of the terrified parent?

They're keeping it fresh.
In order for a blog to be successful, new content must be created regularly, at least once a week, as recommended by Lee Aase in his 
social media pyramid. Unlike a hospital website, which tends to be more static, a blog needs to be regularly updated to keep people coming back to read it, and of course to leave comments. This can be daunting for small hospitals or small communications departments that already handle many other duties. Given this, it's understandable why blogs are the least used social medium for hospitals.

What are some other benefits of blogs? You can include your Twitter feeds right on your blog page, link to your hospital website for more info, and, of course, create your editorial calendar well in advance to align with your overall communications/marketing strategy and meet the community's needs.

So why aren't more hospitals (like us!) using a blog? Is it the resources and time, or is it something else? Interested to hear your feedback.

Clinical Cases and Images: CasesBlog


Cancer prognosis improves with time: StatsCan - Health - CBC News

The prognosis for many Canadian cancer survivors tends to improve, sometimes substantially, after they survive a year or more, a new Statistics Canada report suggests.

For the first time, Statistics Canada has estimated survival rates for people who have already lived at least a year with cancer. The risk of death is often greatest in the first year, the agency said, and old prognosis estimates for the years that follow may no longer apply.

"The good news in this story is, for many, many patients, once they have gone for two or three or four years after cancer diagnosis, their survival compared with the general population is really dramatically better than it was at that time they first had that chat with their oncologist," said Dr. Heather Bryant, a co-author of the report and vice-president of cancer control for the Canadian Partnership Against Cancer.

The researchers analyzed data involving patients across the country and 26 different kinds of cancer diagnosed between 2004 and 2006, looking at survival rates at different time periods after diagnosis. The estimates are based on the average survival time for large groups of patients, rather than an individual's prognosis.


Think Like a Doctor: A Litany of Symptoms -

The Challenge: Can you solve a medical mystery involving a once healthy older woman who becomes physically and mentally debilitated in a matter of months?

Last month, the Diagnosis column of The New York Times Magazine asked Well readers to sift through a difficult case and solve a diagnostic riddle. Hundreds responded, and several of you succeeded in solving the mystery.

If you missed out, here's another chance to play medical detective. Below you'll find a summary of a new case. The first reader to solve it gets a signed copy of my book, "Every Patient Tells a Story," along with the satisfaction of knowing you could outdiagnose Gregory House. Let's get started.

The Presenting Problem:

An otherwise healthy 76-year-old woman with intestinal bleeding and complaints of weakness, fatigue and mood swings.

The Patient's Story:

A fiercely independent and active 76-year-old woman had spent several years caring for her aged mother, who died at 99. Weeks after her mother's death, she collapses at home. She was found to have bleeding from a collection of abnormal blood vessels (known as arteriovenous malformations) in her colon. In the months after treatment, her red blood count returned to normal, but she complained of persistent fatigue and weakness. She told her daughters that she was more tired than she'd ever been in her life, calling it "the big emptiness."
The Doctor's Exam:

Dr. Susan Wiskowski, a family physician in Hartford, had been the woman's doctor for several years and knew her well. Until this year, the patient had been in good health for her age, with only a few medical problems: high blood pressure, which was controlled with just one medication; hypothyroidism, treated with Synthroid; and cataracts, which had been surgically repaired.

Because heart disease can manifest as weakness and fatigue, particularly in the elderly, Dr. Wiskowski referred her patient for a cardiac workup. She also referred the woman to a hematologist, to check on a slightly elevated white blood count detected during the bleeding episode.

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How common is Alzheimer's disease, really? - Big Question -

Those opening up the science section of their newspapers this morning may have been shocked to read that diagnoses of Alzheimer's disease could doubleunder new guidelines approved today by the Alzheimer's Association and U.S. National Institute of Aging. But there's little reason to worry about the potential spike in diagnosis, and several reasons for optimism.

Under the newly issued criteria, Alzheimer's classification now exists as a spectrum, where dementia marks the acute, terminal stage of the disease. A second, less severe stage now included under the Alzheimer's umbrella is a condition called Mild Cognitive Impairment -- a disease that sometimes, but not always, signals Alzheimer's. Finally, at the earliest stage of the disease is something called the pre-clinical phase. During this phase, biological markers could signify a nascent presence of the disease, even though no outward symptoms exist.

Maria Carrillo is senior director of medical and scientific relations at theAlzheimer's Association. We spoke with Dr. Carrillo this afternoon about the rationale for the guideline shift, and how it could help researchers identify and treat Alzheimer's at earlier stages in its development -- and even eventually prevent the disease.

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Tuesday, April 19, 2011

I ❤ Boobies bracelets: If you really ❤ Boobies … -

Last week, a federal judge stopped a Pennsylvania school from suspending two girls from school for wearing breast cancer fundraising bracelets that proclaimed "I ♥ Boobies!" with a nod to their 1st Amendment rights.

Well, score one for free speech.

And zero for breast cancer.

Those ubiquitous rubber bracelets are part of a new trend: sexy breast cancer. There is "Save the Ta-Tas." "Save 2nd Base." "Project Boobies." "Feel Your Boobies." "Jingle Jugs." And, of course, "I ♥ Boobies" itself.

These campaigns aim to bring a fresh, irreverent approach to the youth market, but beyond that, their agenda is, at best, mushy. There is "breast cancer awareness" of course, but given that each October everything from toilet paper to buckets of fried chicken to the chin straps of NFL players look as if they have been steeped in Pepto-Bismol, I think that goal has long since been met.

Sexy breast cancer groups say they promote (with a wink and a naughty nudge) the importance ofbreast self-exam for young women. Sounds good, right? Yet experts no longer recommend self-exam for anyone, let alone high school girls. The unfortunate truth is that even when scrupulously performed, self-exams neither detect cancers earlier than they would be found otherwise nor offer any survival benefit. So where's the "awareness" in spreading that misinformation? The only "♥s" involved are those of women who have or have had cancer, women like me, and our hearts break at the thought of millions of dollars wasted.

Let me be clear here: Young women should touch their breasts. Not out of fear but because they live in a world that continually encourages them to act sexy without understanding their sexuality, to care more about being desirable than about their own desires. Kittenish cancer campaigns reinforce that message, simultaneously pathologizing and fetishizing women's breasts at the expense of the bodies, hearts and minds attached to them. In that way, they actually suppress discussion of real cancer, rendering its sufferers — those of us whom all this is supposed to be for — invisible

I mean, really, forget "Save the Ta-Tas." How about save the woman? How about "I ♥ My 72-Year-Old One-Boobied Granny?" After all, statistically, that's whose rack is truly at risk.

There's so much young people could do to show they care about breast cancer: They could organize childcare or meals for mothers of small children going through treatment. They could volunteer in cancer resource centers. They could hold fundraisers for affected families whose mothers can no longer work. They could spearhead projects on potential carcinogens in beauty products (which, to be fair, is something "I ♥ Boobies," in the wake of criticism of its mission, has now begun to emphasize). All of that would take effort and time, but it would be more meaningful to women with cancer and, I imagine, to teenagers themselves. Because, among other things, the idea that you are taking action merely by wearing a titillating bracelet is not a great life lesson.

I recently suggested as much, ever so respectfully, to the "Feel Your Boobies" campaign, in a comment on its Facebook page, beneath a photo of a Betty Page-type young woman on a pink bicycle. It was instantly deleted, along with posts by others who felt the campaign trivialized cancer or questioned how the funds raised were being spent. Yet the moderator left intact comments such as "I wanna feel ur boobies," "I like feeling people's boobies for them" and "Never wanted to be a bike seat more in my life!!"

I guess, then, make that score: breast cancer zero, free speech zero.

Peggy Orenstein is the author, most recently, of "Cinderella Ate My Daughter: Dispatches from the New Girlie-Girl Culture.",0,7726424.story

Controversial proposal labels grief a disorder - Montreal Gazette

Human grief could soon be diagnosed as a mental disorder under a proposal critics fear could lead to mood-altering pills being pushed for "mourning."

Psychiatrists charged with revising the official "Bible" of mental illness are recommending changes that would make it easier for doctors to diagnose major depression in the newly bereaved.

Instead of having to wait months, the diagnosis could be made two weeks after the loss of a loved one.

The current edition of the Diagnostic and Statistical Manual of Mental Disorders - an influential tome used the world over - excludes people who have recently suffered a loss from being diagnosed with a major depressive disorder unless his or her symptoms persist beyond two months. It's known as the "grief exclusion," the theory being that "normal" grief shouldn't be labelled a mental disorder.

But in what critics have called a potentially disastrous suggestion tucked among the proposed changes to the manual, "grief exclusion" would be eliminated from the DSM.

Proponents argue that major depression is major depression, that it makes little difference whether it comes on after the loss of a loved one, the loss of a job, the loss of a marriage or any other major life stressor. Eliminating "grief exclusion" would help people get treatment sooner than they otherwise would.

But critics fear that those experiencing completely expectable symptoms of grief would be labelled mentally "sick." Dr. Allen Frances says the proposal would pathologize a normal human emotion and could bring on even wider prescribing of mood-altering pills.

"This is a disaster," says Frances, a renowned U.S. psychiatrist who chaired the task force that wrote the current edition of the DSM, which is now undergoing its fifth revision.

"Say you lose someone you love and two weeks later you feel sad, can't sleep well, and have reduced interest, appetite, and energy. These five symptoms are completely typical of normal grieving, but DSM-5 would instead label you with a mental disorder."

And, according to Frances, there's no problem with the current grief exclusion that needs fixing. The DSM already allows the diagnosis of major depression soon after a loss if the grief symptoms are severe - when the bereaved becomes incapacitated, suicidal or psychotic.

Milder symptoms, he says, are better lived through than treated with a pill.

But if the proposed change is allowed, "your psychiatrist or your primary care doctor - more likely your primary care doctor who sees you for less than 10 minutes - can decide that you have major depressive disorder, stigmatize you with an inaccurate label, and prescribe an unnecessary medicine," Frances says.

It would turn profound love into a disease, he says, "and ignores the inescapable fact that grief is the necessary price we pay for our mammalian capacity to love."

The next version of the DSM is due out in 2013. The first, published in 1952, was a thin, 132-page spiralbound volume containing 128 disorders. Its current edition, published in 1994, lists 357 disorders, and runs 886 pages.

Every revision brings fresh controversies. Under the changes being recommended for the upcoming fifth edition, children with frequent temper outbursts and a persistent "negative mood" could meet criteria for a new illness called "temper dysregulation disorder with dysphoria," or TDD. A new category called "behavioural addictions" would be created, beginning with gambling, but with Internet and sex addiction recommended for inclusion in the appendix as conditions worthy of further study.

Dr. Kenneth Kendler, a member of the work group behind the proposal to eliminate the grief exclusion for major depressive disorder, says the change would not lead to the wholesale diagnosis of the bereaved with major depression.

In a statement published on the DSM-5 website, Kendler says the vast majority of people exposed to grief don't develop major depression. It's not a matter of feeling "sad" or "blue," he says.

"Major depression - the diagnostic term - is something quite different." Even then he says a diagnosis by no way means doctors should rush to treat. Rather, he says physicians could adopt a "watch and wait" approach and intervene only when experience and "good scientific evidence" suggests it's warranted.

That offers little comfort to critics, who say that, in the "real world," the DSM is used by family doctors with limited time for patients or training in psychiatry.

"If grieving interferes with your life in a major way and your functioning is seriously impaired, then, OK. Psychiatry and psychology have a role," says Dr. Frank Farley, a past president of the American Psychological Association and a native of Edmonton.

"But it's going to open up the Pandora's box of pharmaceuticals. Is that the way to go with grief?"

Farley lost his first wife almost three decades ago, a woman he loved "madly."

"And I still think of her a lot. I don't view that even remotely as a pathology," says Farley, a psychologist at Temple University in Philadelphia.

"The DSM system is taking too much of the richness and diversity of human behaviour and putting negative labels on it."

YouTube - Sholom Glouberman: Speaking Up for Patients

A health care worker becomes a patient: Sholom Glouberman thought he knew the health care system. After learning how wrong he was, he wrote "My Operation: A Health Insider Becomes Patient." He joins The Agenda to talk about his goal of putting the patient experience at heart of health care.

Sholom Glouberman on patients’ rights - The Interview -

Sholom Glouberman, 70, is philosopher-in-residence at Toronto's Baycrest Centre for Geriatric Care and a noted health care policy analyst. Six years ago, as a hospital insider, he thought—wrongly—that he was prepared for his own major surgery, a colectomy. His experiences before, during and after going under the knife, detailed in his new book, My Operation, led him to start the Patients' Association of Canada.

Q: Why do we need a patients' association?
A: I think the big problem in the health care system is that most of the conditions that people face now are chronic conditions, not acute, and we have a health care system that's really bound to the acute. That's what I'm on about now. For acute care you don't really have to be present as a patient, but for chronic care you have to be there. If you have an acute problem, medical professionals are very good at it because they can go by protocol. You don't have to be involved, you just stay out of the way and let them do what they do, and they're really good at it.

Q: So not only are hospitals not patient-centred, patients are a problem for them?
A: Yeah, this system was designed in the 1880s when people like Koch and Pasteur discovered the cause and cure of acute infectious diseases. And when you get pneumonia, or you have a serious flu, what you do and think is irrelevant: what the doctors do is going to either save you or not. The whole system was structured around that kind of view, that diseases are understandable, they have clear causes, they have clear cures, we just have to discover them and then it's "give us your body and we'll fix you." And they did save my life when I had the post-op septicemia, and I'm very grateful for that.

Q: Does this mean that the more patients become involved, the more they assert themselves, the more it gums up the works?
A: That's right. But if you have a chronic disease, then the way in which you deal with it is very often very individual, there aren't any rules. It can't be so structured and it can't be so protocol-driven. So the entire system is still based on a series of diseases that are not the majority of killers now. Managing the new killers needs more patient input.

Q: But you didn't realize this when you went for your colectomy?
A: I had worked in the system for many, many years, I knew people in the hospital, I checked out everything. I really am somebody that understands—supposedly—how the system works. But when you get into it and you're treated by it you give up—the system is too powerful for an individual. I suffered quite a severe shock to my system, I was surprised, and frightened, and the emotional upheaval lasted until quite recently.

Q: The main problem portrayed in your book is slipping into automatic deference, even when you suspected the doctors were wrong.
A: That's right. That, I think, is a very big piece of patient dissatisfaction. And if it were one-sided it would be one thing, but in fact you're encouraged to slip into that state—if you push a little bit, the pushback is much harder, you know? Moments when I tried to complain, or tried to say something, very quickly I'd be put back in my place.

Q: One specialist asked you to do something you thought (correctly) was unnecessary, and missed your high blood pressure, and claimed not to know the source of your infection although it was written on the chart on your bed. But you still did just what he told you to do?
A: Yeah, yeah. I ended up doing it anyway. I really want to emphasize the fact that passivity is something that's trained into us and that the system expects. You don't have to be that way, but it requires quite a lot of effort.

Q: It was almost funny the number of times you had to write on your reproduced records, "signature illegible."
A: That's a trick that nurses use. I wanted to find out why they were illegible, and I was told that a lot of nurses don't want to be identified directly. The fear is that they're going to be called to account. Nurses can be sued as much as doctors can, and that's started to happen. There is a list of the nurses assigned to you, but it would be quite hard to track down, just like it was very hard for me to get my medical records.

Q: Would that be even harder for regular people?
A: Very hard, almost impossible. The way you get a record is by having a lawyer. I mean, when you're ready to sue and you want to get the entire record for the suit then the hospital is bound to cough it up, and the person who gets it for you is the complaints officer. The complaints officer gave me a break and found it for me. The complaints officers in the hospitals call themselves patient representatives, but in truth they're just employees of the hospital and their job is to defend the hospital, in the end. So I was very lucky.

Q: Are the nurses' fears justified?
A: I think it's a false fear, but it's one that they have. By and large, I think that, in the Canadian health care system, there isn't a high degree of accountability. For doctors in particular, their protective association is so powerful that it's very hard to sue doctors and win. Even if you do win, it's never a substantial amount of money, so you can't really teach doctors a lesson by going after them, here.

Q: The key moment in your surgery was when your doctor, inexperienced in laparoscopy, told you just before the procedure that the experienced man he had lined up to assist was unavailable but he had found another. Do you think, given your post-op complications, it was a mistake to go ahead?
A: I think it was a mistake in retrospect, I think that I should have let the surgeon do what he really knew how to do [a standard incision], but that's what I chose at the time. I was in the same kind of position as the patient facing a sleep-deprived surgeon, I was shaved, I was enema'd, I had been preparing for six weeks…

Q: Now you believe that patients in your position should consider saying no?
A: I think that the whole way these things are structured should be changed, that there's so much more that has to be told to the patient when the patient is compos mentis, and that the prep time for the surgeon has to be much longer than it is. Because this, after all, is not an emergency procedure, so it's much more like a chronic condition than it is like an acute condition, but the way in which it's treated is peremptorily, right? You're given a peremptory discussion and they say, "Don't worry about this, it'll all be fine. I'm a great surgeon, I'll take care of you." So you back off. And all of that, it's deep in the medical education, very, very deeply systemic.

Q: In your book you write that communication, or rather its lack, is a key source of patient frustration, but that health care professionals have a strong disinclination toward it. What did you mean by "pixie dust"?
A: The anxiety that the patient feels is not something that the practitioner or the provider is immune from. Cutting into somebody isn't easy, you know, and the idea that you could cause infection and all kinds of pain and possibly death is something that you have to inure yourself against. So the pixie dust is the cloud of anxiety that affects everybody in the hospital in different ways, that I think the providers try to make themselves immune to. They harden themselves against it. And it's a disincentive to communication, creating an aversion to dealing with the emotion of patients and families.

Q: You note that CT technicians did tell you about the infinitesimal chance you might die during the scan, but not about the much higher possibility you would…
A: S–t my pants?

Q: That must have been a horrible low point.
A: Yeah, but it's not atypical, and it goes together with the pixie dust stuff—it's what they see and what they ignore.

Q: How did all of this lead to the Patients' Association of Canada?
A: What I did was get myself onto a hospital patient-centred committee. I got a bunch of other people who had had patient experiences to sit with me, and that was the beginning.

Q: What, realistically, can be changed?
A: There are three different levels where the system has to change. At the individual level, patients have to be made more capable of dealing with the system as individuals with their practitioners. I think that that's really hard to do. I think that that requires changes in the education of practitioners, as well as helping people take on more responsibility for themselves. That's tough, really tough. The middle level is designing services, and I think that patients can be more involved. There are examples of this in cancer care where families of kids who've had cancer are paid to come into the hospital and help families with new kids who have cancer, to give them a sense of what the system is like. The third level is at the policy-making level. Patient perspective is not part of the policy chain. Patients should be part of it.

Q: Do you see signs of that?
A: It's beginning to happen. There are patients on boards of hospitals and health care organizations now. But the patients have to be trained up so that they're not taken over by the system, and they have to have support. That's why we need a patients' organization that stands behind them and is a place where they can come to for resources and for help.

Patients' Association of Canada | Patient led. Patient governed.

The Patients' Association of Canada (PAC) has been established to fill an important gap in the health field. Until now, there have not been any national, patient-led and patient-governed organizations that speak to the experience that people have as patients.

In many public discussions about health care, the patient perspective is presented by disease-based organizations, health care professionals, researchers, or policy makers, who often have their own points of view that should not be confused with those of patients. This organization is part of a larger trend to engage citizens with their communities and to enable them to speak for themselves.

Patient stories

Important to our association is the collection of patient narratives, documenting patient experiences. It is through the collection and articulation of these narratives that we hope to gain a more thorough understanding of what the patient perspective is on current health care systems and services, and the criteria that describe patient sensitive care.

Parents would seek genetic tests for common illnesses for their kids -

Parents are interested in genetic testing for their children to find out kids' risks of common health problems including cancers and heart disease, according to a new study.

But as such testing becomes more widely available — already, several companies sell tests like these directly to consumers — it could pose a challenge to pediatricians and other health providers who will have to advise parents on the benefits and risks of learning what lurks in a child's genes, the journal Pediatrics reported Monday.

"Prudence dictates thoughtful consideration of these new tests in relation to children's health," wrote the study's authors, led by Kenneth P. Tercyak, a psychologist at the Georgetown University Medical Center.

There are several reasons why, the authors said. While there are potential upsides to testing kids for common diseases (learning that your son has an enhanced risk of heart disease could let you emphasize healthy eating and exercise early on; learning that he's not at risk could be very reassuring) there are downsides, too. Testing your child's genes could be an invasion of privacy. Also, it remains unclear how useful or actionable the information that current tests provide really is. Plus, parents may not anticipate how they'll react to learning about an increased risk for disease.

To date, professional organizations have cautioned against predictive genetic testing on kids, the paper reported, based on cases where tests in question look at serious conditions for which there is no prevention or cure available — the most common situation thus far. Sussing out risks for preventable illnesses may be a different matter.

The study was based on a survey of 219 parents of 445 children ages 17 and under. The parents were participants in a study about genetic testing for themselves, and answered an additional panel of questions about genetic testing for their kids. The genetic test in question looked at genetic changes associated with increased risk for colon, skin and lung cancer, heart disease, osteoporosis, high blood pressure, high cholesterol and Type 2 diabetes.

Generally, parents indicated that they believed the benefits of genetic testing on their children outweighed the risks. Noting this, and anticipating that parents would begin approaching healthcare providers to ask for testing more frequently, the study's authors recommended that pediatricians begin devising ways to counsel parents about potential outcomes.,0,3361714.story

Monday, April 18, 2011

Autism Now Series: A Viewer's Guide | The Rundown News Blog | PBS NewsHour | PBS

The PBS NewsHour is launching a special series of reports, both on-air and online, about a puzzling disorder that touches many lives across the U.S.: Autism Now will take a unique -- and uniquely personal -- look at how the condition impacts families, schools and communities. -- Internet Journal of Emerging Medical Technologies

Medgadget is an independent weblog written, edited and published by a group of MDs and biomed engineers. The intended audience are medical professionals that are looking for the latest in the world of medical technolog.