All medical residents have experience with patients we call "frequent fliers": people with complex illnesses who require frequent hospitalization. Frequent fliers have long lists of medications and an abundance of medical paraphernalia, and their charts are so thick they have to be divided into multiple volumes. When I was a resident, they were the patients who made me mutter one of the seven words you can't say on television when I had to admit them to the hospital.
So it was with one such patient, a little girl who had a rare and devastating genetic condition called trisomy 18. This little girl was deaf, blind, couldn't speak and was bedridden. On average, children with trisomy 18 don't live beyond 2 weeks of age. But for this little girl, medical advances -- oxygen, home ventilators, surgically implanted feeding tubes, liquid nutritional supplements, intensive care medicine and home hospice care -- allowed her family to push her well beyond those limits and keep her alive.
Back then, I was too numb to care about anything more than getting this girl off my service as fast as possible. If there were bigger, more metaphysical issues -- like why her parents chose to keep her alive -- I didn't have much more than a shard of time or energy for them.
It wasn't until last night, when I was reading an editorial in JAMA from 2006 called "Changing Premed Requirements and the Medical Curriculum," that those memories came back to me. The paper's author crisply argued for a more humanistic course of study for aspiring doctors. He recalled an earlier reform, the Flexner Report of 1905, which established new standards for medical education in the U.S., at a time when "many recognized that the old heroic treatments -- purging, bleeding cathartics and proprietary medicines -- were ineffective and dangerous." He went on to say that the practice of undergraduates now spending six semesters of college taking subjects like calculus, physics and organic chemistry, while important, had little value in how doctors care for patients. To sustain a modern medical career, he eloquently stated, aspiring doctors must be steeped in ethics, communication and leadership.
Had I thought about these things a decade ago, I would likely see that little girl with trisomy 18 and her parents very differently.
The author of the paper is Ezekiel J. Emanuel, M.D., Ph.D, oncologist and bioethicist. At the time he wrote the paper, he was the director of bioethics at the National Institutes of Health. Today, he works in the Obama administration. As many readers have heard, Emanuel, the brother of Rahm Emanuel, White House chief of staff, has become a political piñata.
In 1996, Emanuel penned an article for the Hastings Center, a nonpartisan bioethics institution, in which he posed the academic question of why the U.S. has failed to enact universal healthcare. In typical philosophical fashion, he laid out theoretical extremes to examine his proposition of what constituted "good" in a democratic society. In one extreme, he mentioned "not guaranteeing health services to patients with dementia."
Not surprisingly, some of the most vocal and myopic opponents of health reform seized a few phrases in the article and accused Emanuel of providing the philosophical basis for "death panels," the current right-wing delusion about "Obamacare" mandating euthanasia for ailing senior citizens. Sarah Palin warned the country to keep an eye on Emanuel's "Orwellian thinking."
The article is neither Orwellian nor does it support euthanasia. In response to the recent political brouhaha, Emanuel told Michael Scherer of Time, "It is incredible how much one's reputation can be besmirched and taken out of context." In fact, the engagingly philosophical article is only one of many in which Emanuel is creating a storied career of tackling some of the most intellectually and emotionally daunting dilemmas in modern medicine. His impressive collection of work includes some 180 publications over the last decade, works that have investigated and proposed solutions to a host of serious problems. Most of all, he is a sincere and dedicated advocate for patients and their healthcare.
Much of Emanuel's work has explored and increased our understanding of what doctors, patients and their loved ones go through in the final months of life. In a 2004 paper in the Archives of Internal Medicine, he looked at how doctors should speak with caregivers about death and dying -- something none of us are eager to do. Yet he found, contrary to our assumptions, that both doctors and patients could have this kind of discussion in a helpful manner and with less tension than we imagined.
The study that struck me, a pediatrician, is a 2001 study from the Journal of Clinical Oncology that looks at how pediatric cancer specialists managed end-of-life care in children. Emanuel and his co-authors reached a tough conclusion: "Pediatric oncologists reported a lack of formal courses in palliative care, strikingly high reliance on trial and error in learning to care for dying children, and a need for strong role models in this area. The lack of an accessible palliative care team or good pain service was often identified as a barrier to good care."
In a Hastings Center commentary, "Justice and Managed Care," Emanuel considered the hard question of how to use finite healthcare resources in a world where patients and doctors have infinite needs. Above all else, the article demonstrates his commitment to doctors and patients.
"The aim of health care is curing disease, relieving pain and suffering, promoting public health, pursuing research to improve health, and so on," he wrote. He then laid out principles for achieving these goals, ones that strongly support transparency and autonomy for patients, justified by "the necessity of respecting individuals as rational and autonomous moral agents." Contrary to the absurd charge that he (and Obama) would limit care to certain patients to save money, Emanuel argued in the article, "While efficiency is a legitimate and important goal in the provision of health care, it is not the only goal. We also demand that the health care system be just."
For those who would take that last quote to suggest that Emanuel is a socialist who wants to tear down everything we have and adopt single-payer healthcare, wrong again. In a 2008 Hastings article, Emanuel deftly pointed out that it would do little more than maintain the "fragmented, fee-for-service delivery system that provides profligate and bad quality care." Then he showed how single-payer care would hinder integration of care between different doctors and hospitals, how low administrative costs would perpetuate fraud and how cost control would breed public resentment. He even asked how we would feel if Dick Cheney, and not Ted Kennedy, was the one putting political pressure on any government health service. That kind of thinking shows Emanuel's ability to think beyond the politics of health reform and focus on finding workable solutions.
As I said earlier, as a resident, I was too numb to consider much of what Emanuel has been arguing about reform and terminal illness, and how society should best use its resources. Had I read his work then, perhaps instead of muttering curses under my breath when I heard the little girl with trisomy 18 was back in the hospital, I would have had the intellectual and emotional wherewithal to sit down with her parents, understand their wishes and respect their decision to fight on for their only child. Instead, years later, I'm left with a missed opportunity. Still, I'd like to thank Emanuel for making me think about it now.
This spring, during the swine flu outbreak, I was searching the Web for news when a blog post on the Huffington Post caught my eye. Titled "Swine Flu: Protect Yourself and Your Loved Ones," its author, Kim Evans, offered a unique prescription for swine flu, one she believed could "save your life": deep-cleansing enemas.
"Most estimates are that the average person has ten or more pounds of stored waste just in their colon," Evans wrote. "In any case, many people have found that disease disappears when this waste is gone, and that when the body is clean it's much more difficult for new problems, like viruses, to take hold in the first place. And it's my understanding that many people who took regular enemas instead of vaccines during the 1918 pandemic made it out on the other side as well."
This is not exactly first-line advice on influenza prevention. There's no proof that a cleansing program will prevent influenza. In fact, Evans' notion contradicts basic germ theory. Influenza infection is transmitted through respiratory channels and not, like gastrointestinal infections, through contact with fecal matter. And even if people in 1918 did try to protect themselves with enemas -- Evans doesn't cite any historical record -- there's no evidence the practice saved anybody's life. Note to Evans: People did not have a choice between enemas and vaccines in 1918. The first influenza vaccine was developed in the 1940s.
The Huffington Post is one of the most valuable pieces of real estate on the Internet these days. It operates mostly as a news aggregation site (it has featured Salon stories) and throws open its doors to a wide range of bloggers, who cover everything from politics to entertainment. "When it comes to health and wellness issues, our goal is to provide a diverse forum for a reasoned discussion of issues of interest and importance to our readers," Arianna Huffington, the site's namesake founder, author, socialite and pundit, told me.
I would like to believe her. But when it comes to health and wellness, that diverse forum seems defined mostly by bloggers who are friends of Huffington or those who mirror her own advocacy of alternative medicine, described in her books and in many magazine profiles of her. Among others, the site has given a forum to Oprah Winfrey's women's health guru, Christiane Northrup, who believes women develop thyroid disease due to an inability to assert themselves; Deepak Chopra, who mashes up medicine and religion into self-help books and PBS infomercials; and countless others pitching cures that range from herbs to blood electrification to ozonated water to energy scans.
As a physician, I am not necessarily opposed to alternative health treatments. But I do want to be responsible and certain that what I prescribe to patients is safe and effective and not a waste of their time and money. A recent Associated Press investigation stated the federal government has spent $2.5 billion of our tax dollars to determine whether alternative health remedies -- including ones promoted on the Huffington Post -- work. It found next to none of them do. The site also regularly grants space to proponents of the thoroughly disproven conspiracy that childhood vaccines have caused autism. In short, the Huffington Post is hardly a site that promotes "a reasoned discussion," in its founder's words, of health and medicine.
Practically since its inception in 2005, the Post's health coverage has been the subject of scrutiny and criticism from physicians and medical experts. Steve Novella and David Gorski, both academic physicians, who run the blog Science-Based Medicine, have been at the forefront of the opprobrium. In a post this April, Novella declared that Huffington Post readers were being "fed demonstrable medical falsehoods and misinformation."
In May, Huffington hired Patricia Fitzgerald, who had previously blogged on the site, to serve as Wellness editor. In Huffington's words, Fitzgerald will add "another layer to the vetting process for posts dealing with medical, health, and nutritional advice." Fitzgerald, an acupuncturist with a master's degree in traditional Chinese medicine and a doctorate in homeopathic medicine, is the author of "The Detox Solution: The Missing Link to Radiant Health, Abundant Energy, Ideal Weight, and Peace of Mind." Her posts had praised actress Jenny McCarthy for healing her son's autism with "biomedical intervention," a menu of "detoxification, and removal of interfering factors, such as yeast, food allergies, viruses, bacteria, and heavy metals," restrictive diets, expensive nutritional supplements and chelation therapy -- all unproven.
Fitzgerald told me her mission "is to assist in providing interesting, informative and well-written pieces that support and inspire people looking to live healthier lives." She added, "I spend a considerable amount of time helping medical professionals used to writing for other medical professionals develop a style more accessible to a general audience. Every blog post on HuffPost is reviewed by our editorial team. I vet and offer input on some posts dealing with health advice."
Not everybody who writes about health and medicine on the Huffington Post appears to cling to alternative treatments like detoxification and restrictive diets. Dr. Lloyd Sederer, a psychiatrist and medical director of New York's Office of Mental Health, and Dr. Sarah Lovinger, who blogs about health and the environment, have admirable public health backgrounds and seem to care about issues on the ground. Sederer, for example, recently posted a strong piece about mental health problems in soldiers returning from Iraq and Afghanistan, and Lovinger has been outspoken in her advocacy for healthcare reform.
But frequent visitors to the Huffington's Post "Living" site, home to its health and medical coverage, cannot avoid the preponderance of posts by enthusiastic champions of dubious treatments and therapies.
Evans epitomizes the Post's health bloggers. Her bio on the site describes her as "the author of 'Cleaning Up!' and the creator of The Cleaning Up! Cleanse, a powerful body cleanse that addresses deep levels of toxicity throughout the body and a common fungal problem, candida overgrowth." In other publications, Evans fixates on candida as the root of many medical problems, including cancer. While this theory is popular in the alternative health community, it is scientifically meaningless. It's true that candida overgrowth can cause relatively minor problems in healthy people taking antibiotics (vaginal yeast infections in women, thrush and diaper rashes in babies), and can cause serious systemic infections in those whose immune systems are compromised, such as HIV-infected patients. But there's no credible research or study that demonstrates chronic health problems or cancer can be cured by eliminating candida.
When I asked Evans to substantiate the views she has expressed on the Huffington Post, I had a hard time being persuaded by her answer. "First and really foremost, articles on the Huffington Post are typically about 15 paragraphs max and generally, they are not written for the medical or scientific community," she said. "My articles in particular are written for the average person, and the average person generally isn't interested in reading every study ever published or all of the research available to support an argument."
A more regular Huffington Post blogger is Dr. Srinivasan Pillay. According to his biography, Pillay is everything from a "psychiatrist" to "certified master coach" to "brain-imaging researcher" to "public speaker." Last March, Pillay wrote a piece, "The Science of Distant Healing," which began with the following question and bold claim: "There is much written about how our good intentions help others. But can your good intentions really reach someone who is not physically present, and how do we know this? In this column, I will present the current evidence that discusses this phenomenon and provide some explanations as to why distant healing has a place in modern scientific thinking." He went on to cite a "well-designed study" that proves that people, by using their thoughts, can heal (or harm) others who are sick in other locations.
Whatever that "well-designed" study may be (Pillay didn't specify, nor did he return my requests for an interview), the sum of the evidence suggests that distance healing is snake oil. Medical researchers at the University of Exeter in England looked at studies noting the health benefits of distance healing and found the research was hampered by serious flaws. Rigorous studies conducted by the University of Maryland School of Medicine have demonstrated that no difference exists between distance healing and placebo.
The Huffington Post's most famous unscientific stand is against childhood vaccines. From what seems like its first day on the Internet, the site has played host to the anti-vaccine movement, granting center stage to the movement's most prolific and outspoken proponents, such as author David Kirby, Jenny McCarthy's pediatrician Jay Gordon and detox advocate Dierdre Imus, wife of shock jock Don Imus. (It should be noted the site promoted Robert F. Kennedy Jr.'s 2005 article "Deadly Immunity," jointly published by Rolling Stone and Salon, which accused the Centers for Disease Control, and other health agencies, of covering up the links between autism and vaccines. The article was widely criticized by the medical community and required both publications to make numerous corrections of fact and analysis.)
As if the circus tent couldn't get any bigger, this April, the site posted a piece, "The Judgment on Vaccines Is In???" by actor and comedian Jim Carrey. In addition to the usual anti-vaccine platitudes -- blaming doctors for being in bed with drug companies; attacking people instead of data -- Carrey offered arguments apparently composed by Ace Ventura:
"I've also heard it said that no evidence of a link between vaccines and autism has ever been found. That statement is only true for the CDC, the AAP and the vaccine makers who've been ignoring mountains of scientific information and testimony. There's no evidence of the Lincoln Memorial if you look the other way and refuse to turn around. But if you care to look, it's really quite impressive."
While we might expect loose analogies and logic from a celebrity blogger, we might also expect them to take a little care with the facts. Carrey's piece contains multiple mistakes. He writes, for example, that vaccines contain "ether, and anti-freeze." They don't. Still, the post went up and generated thousands of comments, including many that pointed out Carrey's errors. Huffington states that the site's "policy calls for factual errors in blog posts to be corrected by the blogger within 24 hours of the error being pointed." Carrey's post appeared on April 22 and still hasn't been corrected.
Huffington has been in the public eye for decades as the author of over a dozen books on topics ranging from art to self-help to politics, as a radio talk show host, the wife (and now ex-wife) of a former U.S. GOP congressman who ran for Senate; an ex-California gubernatorial candidate, and now, and perhaps most successfully, the founder of the eponymous New Media juggernaut. In a 2008 New Yorker article, writer Lauren Collins suggested that Huffington was motivated not by money but by the quest to "command attention and to change minds." To that end, she has a long history of being "a budding celebrity contrarian."
Huffington's desire to be different became especially clear when I looked at her views about health. In her 2006 self-help book, "On Being Fearless," she provides her own definition of preventive care, one that's indistinguishable from Evans' blog post. "In today's world, where thousands of chemicals are being used all around us, it's essential both to protect against exposure and to maintain some kind of detox program," Huffington wrote. In the New Yorker, Collins revealed that Huffington has undergone "mercury detoxification, fire-walking, est, microdermabrasion, infrared saunas" and a long list of fad diets. In "On Being Fearless," she gave a description of her own experience with mercury detox, saying she was "stunned to find how much mercury I had in my body."
What Huffington may not know is the test used to determine the amount of mercury in the body is a sham, as proven by medical researchers at the Department of Environmental and Occupational Health, Emory University and other public health institutes. The test artificially elevates the levels of heavy metals in one's body, falsely leading one to believe that they've been poisoned by toxins. In fact, a doctor who routinely prescribed the test has been investigated and disciplined.
In an e-mail to me, Huffington touched on her long and winding road through alternative therapies, dropping the names of major universities (Harvard, Stanford, Johns Hopkins, UCLA) with centers for complementary and alternative medicine, where she has been a patient. But health coverage on the site goes beyond complementary medicine. In fact, the more I read the site, the more I realized its health writers were being chosen not in the name of diversity or on the basis of their qualifications. Rather, as Collins revealed in the New Yorker, they appear to be picked by Huffington on a whim.
One day, after having dinner with Charlie Rose, Huffington broke her ankle. "Rose recommended a foot and ankle specialist at the Hospital for Special Surgery, Dr. Rock Positano. He is now a contributor to Huffington Post," Collins wrote. "In the course of two days in May, Huffington invited the following people to be bloggers: someone she met at a book signing … a fifteen-year old lecture attendee; a bookstore owner; the Asperger's-afflicted teenage son of a radio d.j.; a woman, dressed exclusively in green, who was trying to stop insecticide spraying."
Huffington also relies on her Rolodex to make executive decisions. Recently she hired Dr. Dean Ornish to become the site's medical editor (a spokesperson for Ornish confirmed this). When I asked her how she chose him, she told me that the two of them have been friends for quite some time, which led to her offering him the job. Ornish, who will consult with Wellness editor Fitzgerald, will not be paid by Huffington.
If their mission is to indeed vet the health posts more vigorously, they will have their work cut out for them. One would expect a Huffington Post editor to insist health writers like Pillay support their unconventional claims with peer-reviewed research, published in reputable journals. Yet this is seldom the case. As a doctor and writer, but mostly as a consumer, I find this lack of substance callous. An editor should have demanded that Carrey correct his egregious mistakes about vaccines within the site's 24-hour policy. That same editor should have asked Evans to link to the relevant medical study when she claimed, "A study in 2005 found that newborns are being born with literally hundreds of chemicals in their bloodstream, many of them known to cause cancer." The story didn't link to a journal article but to Newsweek, which was referencing a study of newborns and chemicals by the Environmental Working Group, a nonprofit.
When I asked Fitzgerald about why the site granted so much credence to the vaccine-autism link, her response left me unimpressed: "When it comes to hot-button topics like this one, I think it's important to present as many viewpoints as possible -- and that is what we have tried to do on HuffPost." It's hard to see a diversity of viewpoints, though, in Imus, Kirby, Carrey, RFK Jr., Gordon and Fitzgerald herself, who all maintain that childhood vaccines contributed to autism.
If the site is now making an effort to feature all sides of a health debate, it's not apparent to Ken Reibel. Two months ago, Reibel, founder of the blog Autism News-Beat, and a parent of a child with autism, contacted the Huffington Post to express his dissatisfaction with its anti-vaccine bias. He was invited to blog by Jonah Peretti, a co-founder of the Post. However, neither Fitzgerald, Ornish nor anybody else has followed up with Reibel, and so he has not been able to post on the site. To its credit, the Huffington Post did run a recent post by UCLA pediatrician Harvey Karp defending vaccines (predictably the piece drew the ire of the Post's audience and Gordon, who harshly criticized Karp).
Arthur Allen, who has written regularly for Salon and Slate, blogged on Huffington Post to respond to Kirby's anti-vaccine posts. Allen told me he was dismayed by his experience at the site. "There is zero oversight of anything at HuffPo as far as I can tell," he said. "HuffPo seems like a place to dump any opinion you have you don't mind not being paid for. That tends to be people with agendas, including PR types." Allen hasn't written for the site since 2007. "I like to do careful reporting, and that takes time," he said.
One thing that the site's club of health bloggers seem more than ready to do is to defend themselves or their friends in the face of criticism. Take Chopra's recent post defending Oprah Winfrey against reports, including my own, that she dispenses bad medical advice on her show. Chopra doesn't defend the credibility of Oprah's experts or provide proof to support the health views and advice of Suzanne Somers and Northrup. Instead, he litters the piece with attacks on doctors and the medical establishment. "Scientific medicine by and large ignores wellness, prevention, and alternative medicine in general," he writes. "On a daily basis doctors don't deal in these things; few take courses in medical school centered on them."
It's hard for me to agree with Chopra's sentiment. Most primary care doctors I work with and know advocate for and offer preventive care to our patients. Further, they do not routinely ignore or get defensive about alternative medicine -- though, justifiably, they do view it with skepticism, given the lack of evidence for much of it.
The Huffington Post's poor science raises the question of what are the ethics of heath and medical writing and blogging? I posed the question to Dr. Robert Lamberts, a primary care physician, who writes the well-respected blog Musings of a Distractible Mind. When I asked him about the rules (formal or informal) of science blogging, he told me that health writers and bloggers expect one another not just to provide a clear perspective, but also to make sure that they disclose any potential conflicts of interest, citing appropriate sources and changing inaccuracies when pointed out. That seems like a more than reasonable expectation, yet the Huffington Post does none of these things with diligence. "I do have problems with people without medical backgrounds ... becoming medical experts and influencing people to their opinions like they are political opinions," he told me. "This is the problem with the whole immunization 'debate.' It is not being done between medical professionals, but instead is being handled like it is a political discussion -- trying to convince people based on emotions rather than facts."
Not long ago, Huffington praised President Obama for stating he wanted to ensure "that scientific data is never distorted or concealed to serve a political agenda and that we make scientific decisions based on facts, not ideology." But Huffington has distorted science and facts to serve a health agenda. In correspondence with me, she insisted her site doesn't "impose an editorial litmus test favoring one discipline over another." In the end, though, a sincere editorial process is about more than offering a range of disciplines. It is about holding writers accountable for the fairness and accuracy of their messages. And right now fairness and accuracy in health and medicine take a back seat to sensationalism and self-promotion on the Huffington Post.
The word "circus" would be a severe understatement to describe the medical world surrounding Michael Jackson. It features live-in cardiologists, traveling anesthesiologists, home IV poles and stockpiles of drugs that most doctors would never dream of prescribing. It all seems to be moving toward a criminal investigation of some kind. Just now, though, none of the doctors are speaking publicly about his professional relationship with Jackson. Save one.
Last week, Dr. Arnold Klein, Michael Jackson's Beverly Hills dermatologist, showed up on "Larry King Live." Klein is usually described as "the father of cosmetic dermatology" (he pioneered the use of botox for wrinkles) and "the dermatologist to the stars." Klein's bio on his Web site shows him to be a well respected, philanthropic and frequently published medical expert. But Google him and you'll notice few serious publications between the numerous results that land you at TMZ and other Hollywood gossip sites. Klein seems to bask in this world like a lizard under a hot sun. And so it was in the spirit of infotainment that Arnie (as his friends call him) made the decision to dish about Jackson. At best, Klein and King behaved in bad taste. At worst, I was left wondering if Klein and his loose lips crossed a medical law.
Klein began by revealing personal details about his friendship with the singer. To my surprise, he then divulged facts about Jackson that only a physician knows about a patient. In describing his first meeting with Jackson, Klein noted how the singer had "a butterfly rash and he also had severe crusting you could see on the anterior portion of his scalp." He subsequently "did a biopsy" on Jackson and diagnosed him with Lupus, an autoimmune disorder that causes those and other symptoms.
Klein went on to reveal many other details, like how he was "rebuilding" Jackson's face before his comeback concert. On the subject of drug use, Klein continued to chat up the audience. He admitted to providing Jackson with Demerol to sedate him and stated that, contrary to reports, Jackson was not "riddled with needle marks" (though Klein told King he never examined his entire body). Perhaps most revealingly, Klein, as if he had Jackson's chart in front of him, dished about the singer's past medical history. "Michael, at one time, had an addiction," he said. "And he went to England and he withdrew that addiction at a secure setting, where he went off of drugs altogether. And what I told Michael when I met him in this present situation when I was seeing him, that I had to keep reducing the dosage of what he was on, because he came to me with a huge tolerance level."
Klein's comments struck me as incredibly disrespectful. More than that, if I or any other doctor revealed those kinds of intimate medical details publicly, we might be vulnerable to a charge of violating federal health privacy laws, a punishable offense.
These laws stem from 1990s legislation known as the Health Insurance Portability and Accountability Act or HIPAA. Basically, the law forbids medical professionals from disclosing health information unless a patient provides consent to do so. Among other things, HIPAA is the reason that your doctor can't fax a letter to you or transfer your records to another doctor without your filling out permission forms. It's the reason the mother of a teenage patient of mine, a nurse, was disciplined when she looked at the medical records of her own son. It's also the reason you'll never see me, or any other physician, reveal the identities of our patients -- without their consent -- when we discuss or write about them.
What's made HIPAA particularly visible -- and health professionals especially paranoid about it -- are recent stories of violations of celebrity health cases. In 2007, 27 New York Hospital employees were suspended for peeking at George Clooney's medical records after he had a motorcycle accident, as CNN reported. More recently, according to the Los Angeles Times, a UCLA Medical Center employee was disciplined for leaking Farrah Fawcett's (remember her?) records to the National Enquirer.
In the shadow of the Fawcett story, it struck me as bizarre that Klein (who is himself on staff at UCLA) went public about Jackson. What made it even more unusual was that on June 30, Klein's attorney, Richard Charnley, released a statement requesting privacy that directly referenced HIPAA:
"Dr. Klein is aware of media reports connecting him to Michael Jackson. Because of patient confidentiality, Dr. Klein will make no statement on any reports or allegations. Out of respect for his patients and adherence to federal HIPAA regulations, Dr. Klein asks that the media not contact him or his patients, nor interfere with their medical treatments. Like millions of Michael's fans around the world, Dr. Klein is saddened by Michael's death and extends his condolences to the family."
Klein seemed to have had it right -- before he went on "Larry King Live." And HIPAA does apply to deceased individuals. "It doesn't matter whether a patient is dead or alive -- the HIPAA and state privacy law protections still apply," Stephen K. Phillips, a healthcare attorney in San Francisco, told me. "A deceased patient's rights accrue to his/her legal representative for enforcement and redress purposes."
At the same time, said Phillips, it's possible that Jackson may have given Klein permission to discuss his PHI, or private health information, in public. In that case, Phillips said, "you haven't violated the law by doing so, unless and until that authorization is withdrawn." I tried to contact Klein to clarify these important points several times, but never received a response. His attorney didn't get back to me either.
Whatever the case, Klein most certainly violated something fundamental -- common decency. A dead man's supposedly close friend, a doctor, goes on prime-time TV to eulogize him. "For about five hours, I couldn't move, because I was very close to him," Klein told King. His tribute then turns into his very own "Michael and Me" medical memoir, biopsy results included. It's the kind of jabbering that gives Hollywood and cable news a bad name, although most of us don't flinch at that anymore. But this time I had to flinch. By epitomizing the limousine-chasing, wannabe-celebrity doctor, Klein bruised the reputation of his colleagues everywhere.
The story of Daniel Hauser, a 13-year-old boy from Minnesota with Hodgkin's lymphoma, became tabloid fodder overnight. The boy and his mother are on the lam because the mother refuses, because of her beliefs, to authorize chemotherapy treatments for her son. Hodgkin's lymphoma has a 90 percent cure rate with chemotherapy, and a 95 percent chance of killing a person without it. Chemotherapy will likely save Daniel's life, and as a pediatrician I wouldn't hesitate for a moment to recommend it.
But I would also like to turn down the volume on the talk-radio chatter and outraged editorials. That's because nobody seems to be talking about what it takes to beat Hodgkin's (or any other cancer). What it takes is a grueling regimen that can indeed give even a dying person pause. In fact, the Hausers didn't refuse chemotherapy outright. They defied doctors and a judge's ruling only after Daniel experienced some of its violent effects following one round. If you don't understand why, listen to my friend, Arun Ponnusamy, 36, who beat acute lymphocytic leukemia. "Surviving cancer is one thing," he says. "Surviving chemotherapy is another thing entirely."
Ponnusamy is now an educational consultant in Los Angeles. He was diagnosed with cancer in his early 20s. His disease, like the Hodgkin's that afflicts Hauser, has a high survival rate if treated right away. As a young adult, Ponnusamy underwent a regimen of chemotherapy treatments that Hauser, if the courts have their way, will likely experience.
Fighting cancer pits a person against potent drugs. But because of their horrid side effects, they take the doctors' credo, "First, do no harm," to its limits. Sophisticated as chemotherapy drugs may be, they're not smart enough to distinguish tumor cells from healthy cells, leaving one's entire body vulnerable to their toxic effects.
Ponnusamy underwent two years of chemotherapy at the University of Chicago Medical Center. For many months, surgeons administered a central line into his chest. "I literally felt possessed," he says. He recalls hours of nausea and vomiting after infusions. When that was over, there would be hours more of dry heaving over the toilet. "I remember asking myself more than once: 'How can this be doing me any good?'"
He dropped from his usual weight of 145 pounds to 110, the result of an inability to tolerate foods and of anorexia from the drugs. He stopped fitting into his normal clothes and, like most cancer patients, began losing his hair. "I didn't recognize myself," he says.
On several occasions, Ponnusamy had to be readmitted to the hospital after his treatments because he developed high fevers and shaking chills. Most anti-cancer drugs suppress the bone marrow, where your body rapidly produces cells of the immune system. Those of us who have taken care of cancer patients know that within days of receiving a round of chemotherapy, a patient's immunity grinds to a halt and white blood cell counts drop to near zero, leaving the body defenseless. Suddenly even common infections become life-threatening. Some patients experience severe erosions of, and infections on, the lining of their mucous membranes, leaving their lips, gums and the inside of their mouth, throat and nose and even their stomach inflamed, bleeding and burning with pain.
Ponnusamy, like many other cancer patients, found himself admitted to so-called positive pressure rooms, where air is blown out to minimize any infectious pathogens. He was sequestered ("bubble boy," his brother and sister called him) and given dose after dose of I.V. antibiotics for up to a week at a time. In addition to losing white blood cells, patients lose red blood cells and platelets, leading to anemia and a difficulty in stopping bleeding, even with the smallest of cuts.
Cancer patients usually go through several rounds of chemotherapy, the number of which is determined by the type of cancer and extent of the disease. Each treatment puts a patient at risk for these complications and others, such as renal failure, another common side effect. All of this can lead to a recurrent cycle of ordeals for patients and their loved ones.
While Ponnusamy had great family support, fighting cancer required sacrifices nobody could have foreseen. His mother moved in with him to help oversee his care. He recalls that his brother, eight years younger and in high school, was uprooted from his home and friends in Ohio and forced to finish school in Chicago. His sister, living in New York, would fly back to see him regularly and even helped to administer his injections, even though she was more scared of needles than he was.
Many cancer drugs have long-term effects. Some of the drugs used to treat Hodgkin's can cause irreversible damage to the heart and lungs. Other chemotherapy agents and radiation therapy can lead to infertility and even secondary cancers of the thyroid gland.
Ponnusamy, having survived his battle with cancer, still has leftover effects today, including permanent numbness in his feet (known as a peripheral neuropathy). He has to regularly examine his feet to make sure he hasn't injured them or developed any infections. Four years ago, he began having some leg pain. When his doctor looked at an X-ray of his left femur, Ponnusamy discovered that his chemotherapy had permanently weakened the bone, leaving him vulnerable to fractures and limiting his ability to perform certain activities.
What's difficult to gauge is what fighting through cancer does to one's psyche. Ponnusamy recalls dealing with his adversity with humor, maybe a bit too much. He tells me that one support group asked him not to come back after he distributed an article from the Onion parodying a man's battle with cancer. Still, he says, "not an hour goes by when I don't think about having had cancer." He still has the scar on his chest from where he had his central line placed. In his home, he has a copy of his chemotherapy protocol, notes from other cancer patients he met, and even some old Marinol, which his doctors prescribed to help abate his pain and anorexia. Although he's at low risk of recurrence and no longer requires any special surveillance to keep his cancer in check, getting sick with something as trivial as a cold still gives him a good deal of pause.
So I sympathize with the Hausers, who want to treat Daniel with complementary medicine. But there's a reason why it's called complementary. It may have a place, but that place must be alongside medications that will save Daniel's life, save him from a death that is bound to be more ugly and prolonged than hellish cancer treatments.
In the end, chemotherapy saved Ponnusamy's life, and although he wouldn't wish it on anyone else, he agrees it's the right choice for the Hausers. "I get how horrifying it would be to see your child go thorough chemo," he says. "But there's a light at the end of the tunnel."
Not long ago on her TV show, Oprah Winfrey sat beside actress and self-proclaimed women's health guru Suzanne Somers and told millions of viewers to read Somers' 2007 book, "Ageless: The Naked Truth About Bioidentical Hormones." Somers was singing the benefits of bioidentical hormone replacement therapy for postmenopausal women.
Hormone replacement therapy is one of medicine's most controversial subjects. In 2002, after a period of prescribing HRT routinely to women to improve their energy, sex drive, heart health and bone strength, and to reduce the risk of certain cancers, doctors were forced to do an abrupt about-face. A study known as the Women's Health Initiative, which followed more than 150,000 postmenopausal women starting in 1991, concluded that prolonged HRT (more than two years) increased the risk of heart attacks, strokes and breast cancer. It wasn't what doctors or their patients had hoped for, but it was the scientific truth. Doctors have therefore been recommending that hormone replacement therapy be taken for short periods of time to mitigate those risks.
But what Somers was advocating was radically different from standards of medical care. She admitted to using mega-doses of bioidenticals continuously and aggressively. She started her regimen, she told Winfrey, by rubbing bioidentical estrogen and progesterone creams on her arms, injecting another hormone, estriol, vaginally every day, and topping herself off with 60 different oral supplements. Physicians who may have been watching the show surely winced, but Winfrey was not concerned. "Many people write Suzanne off as a quackadoo," she declared. "But she just might be a pioneer."
It's not the first time Winfrey's advice on health issues has raised concern. In the past, the media mogul has been criticized for promoting cosmetic therapies that were untested and later deemed dangerous. Her recent development deal with Jenny McCarthy, who now blogs on Oprah.com and has a television show in the works, drew criticism from children's advocates, as McCarthy and her autism advocacy group, Generation Rescue, have been leading an ideological, unscientific crusade against childhood vaccines. Add in Winfrey's endorsement of the snake-oil self-help book, "The Secret," and Dr. Phil, and you might be tempted to sue her for malpractice.
"Bioidentical" is supposed to refer to drugs that mimic a woman's endogenous hormones. Somers argues that these hormones are more natural, more effective and safer than what doctors prescribe. In reality, however, there are no good medical studies to back up those claims.
The word "bioidentical" has no medical meaning. All hormones, whether they're prescribed or not, are derivatives of plant or animal hormones and manipulated in a lab to get the finished product. Many bioidentical hormones (including the ones Somers uses) come from non-FDA regulated compound pharmacies, where drugs are not subject to the same quality standards as those made by pharmaceutical companies. An FDA survey demonstrated a 40 percent failure rate for compounded bioidentical hormone products when those drugs were tested for purity and potency.
And what about Somer's host? This particular episode was Oprah's second in less than a month on this topic, part of a "great debate" on hormone therapy. But Winfrey didn't pose any tough James Frey-like questions to Somers. She didn't ask about whether her super-hormone regimen could have contributed to Somers' history of breast cancer. She didn't ask Somers about her hysterectomy, the result of pre-cancerous changes in her uterus from her use of HRT. And she didn't ask about the validity of Somer's book's sources, many of whom are neither experts in women's health or endocrinology, nor board-certified physicians, nor experienced researchers.
No doubt Winfrey has scored good ratings with her health episodes. But in doing so, she seems to have thrown therapeutic caution to the wind. Take another example, cosmetic surgery. Periodically, Winfrey will tout a procedure that promises great results, but without discussing its potential problems. On one show several years ago, Winfrey featured a medication called Restylane, which doctors could inject into the eyelid to eliminate wrinkles. What wasn't discussed, however, were the risks of doing that, which include severe eye swelling and blood clots that could lead to blindness. In another instance, she showcased a technique called the facial thread lift, where doctors insert sutures under the skin to tighten lax tissue, referring to it as "a cutting-edge procedure with no cutting edges." After that episode aired, doctors became aware of serious problems with it, including indentations, bunching, dimpling, broken threads and facial asymmetry.
Another major medical topic Winfrey has attempted to address is thyroid disease, a subject that's pitted the mainstream scientific community against alternative medicine for years. In 2007, Winfrey revealed in her magazine that she had a thyroid condition. But she wasn't specific, instead offering that "my body was turning on me." At the time, Winfrey hosted a show called the "The Big Wakeup Call" with her guest, Dr. Christiane Northrup. Winfrey referred to Northrup as "just the best doctor when it comes to women's health issues because she not only has the information, the medical information, but when I called her to talk about the whole thyroid issue, she always connects the mind, the body and the spirit."
On her Web site, Northrup seems more than a bit fuzzy on thyroid disease. She writes: "In many women, thyroid dysfunction develops because of an energy blockage in the throat region, the result of a lifetime of 'swallowing' words one is aching to say. In the name of preserving harmony, or because these women have learned to live as relatively helpless members of their families or social groups, they have learned to stifle their self-expression. These women may, in fact, have struggled to have their say, only to discover that it doesn't make any difference -- because in their closest relationships they have been defined as insignificant."
Northrup told me in an interview that she attributes her comments to her extensive background in alternative and complementary medicine. She said she relies on Ayurvedic and other Eastern approaches to health to treat thyroid disease and other disorders. Yet there's no medical evidence at all to support her view that thyroid disease is the result of a woman's inability to assert herself.
Northrup, who appeared on both hormone episodes, said Somers provided a good opportunity to get out the good news about bioidentical hormones, which Northrup has been trying to spread for more than 20 years. She did, however, call Somers' HRT regimen "far to the extreme of anything I would recommend." And she was blunt in her assessment of TV doctoring. She referred to Somers as "TV cute" with the kind of celebrity cachet that grabs an audience.
I have to wonder about Oprah's socioeconomic perspective on healthcare. After being diagnosed with her thyroid condition, she wrote in her magazine about how she went away to Hawaii for month, where she rested in seclusion and ate food prepared by her chef. Further, the first bioidentical hormone episode featured another regular medical guest, Dr. Mehmet Oz, touring compound pharmacies and the offices of Dr. Prudence Hall in Santa Monica. Hall runs what could be called a medical day spa, where "The Female Medical Visit" consultation with hormone analysis, thryoflex, nutrition consultation, pelvic ultrasound and pap smear (blood work not included) costs $850. Expensive, yes. And don't expect your insurer to pay.
None of these options are exactly prescriptions for the health of the masses. Given that Winfrey's fan base (based on demographics for her magazine) is 90 percent female, has an average age of 45, and has a median individual income of about $36,000 and a family income of about $70,000 per year, perhaps she could provide some more practical medical advice. While standard medical advice isn't as sexy as the stuff of Somers and Northrup's mantra of empowerment, women potentially in need of real help deserve real balance and consideration of their safety. (I would have liked to ask Winfrey and Somers about their level of consideration, but my calls to their offices went unreturned.)
It's not that Winfrey doesn't try to maintain medical credibility in her shows. But her efforts seem subpar. She did include physicians in the Somers episode. But they appeared in taped segments, expressing concern and caution like stern parents. The only "outside" physician in the studio was the obstetrician and gynecologist Dr. Lauren Streicher, but she was placed in the audience and given very little time to rebut Somers' claims. Streicher told me in an email that some of her rebuttals were edited out of the show, including her telling the audience that Somers relied on "experts" without medical degrees or clinical experience.
Streicher stressed that doctors should shoulder the responsibility and accountability of being better guides for the health of women. "There are a lot of profit-motivated physicians out there that take advantage of desperate women who are just trying to feel better," she said. "Quite frankly, policing our own is a much bigger problem than ill-informed actresses dispensing advice. At the end of the day, Somers can say what she wants ... The onus is on us to ensure that our patients are given the correct recommendations and receive appropriate medical care."
It's an admirable point: Doctors should hold each other accountable. But Winfrey is an economy of scale onto herself. Her weekday show reaches millions of people, while each doctor can reach only one patient at a time. That could easily be corrected by Winfrey providing more thought and balance in her medical advice.
With spring in high gear and summer just down the road, doctors thought we'd left another year's influenza season in our collective rearview mirror. All of that changed late last week when the national Centers for Disease Control and Prevention began reporting that people in the U.S. had tested positive for a novel strain of the influenza virus. So far the CDC has confirmed 40 cases in individuals ranging from children to middle-aged adults.
The CDC was quick in getting the public up to speed. Its basic message is sound. Keep an eye on this story and know the facts, which include:
Although it's nice to have those facts on the table, nothing tests a healthcare system more intensely than an infectious outbreak. Viruses are mercurial little pathogens. They spread and mutate with great speed. That's especially true of the influenza virus. Each year it mutates and lures us into a game of "stump the doctor," as we race to create a vaccine for the most likely strain. Most years, including this one, the strains don't change significantly. Doctors call these minor mutations antigenic drift, which means we get a useful vaccine. In very rare cases, as in 1918, there's a major mutation (a more significant antigenic shift). Then all bets are off. At its worst, as in 1918, an antigenic shift can lead to a pandemic.
This outbreak has taken everybody by surprise and, in its initial description, appears to be a significant antigenic shift. There are other quirks as well. First, this swine flu showed up in the middle of spring; flu season is usually between about November and February. Second, we've observed some nontraditional infections. For example, most cases of influenza affect the elderly and the very young (which is why we try so hard to vaccinate those groups first). However, in this case, those affected in the U.S. are older kids and middle-aged adults. Another mystery with this virus is why it's been so severe in Mexico yet so mild here.
In fact, the whole story about what's happened south of our border is still murky -- the numbers of how many have been infected and killed are still fluid. Among the possible explanations for the differences between the U.S. and Mexico are that another virus has co-infected people, making them sicker; that the lack of access to healthcare for many Mexican citizens has led to a more severely affected population; and that it may even be an accounting error, where the Mexican government has counted only the very ill and not tracked the less severe cases. Regardless, we appear to have a lot of work to do before we have any real answers.
Despite the level of uncertainly, the CDC and World Health Organization appear to have a coordinated plan of action. Both old and new media have so far done a good job in communicating with professionals and ordinary folks in need of advice.
As for doctors, we're expecting a lot of calls this week from patients with questions and concerns. Phrases like "outbreak" and "epidemic" are as medically loaded as they get. And while nobody can predict what's going to happen, there are always some basic steps you can take.
First and foremost, while you should take this news seriously, please don't panic. So far, symptoms of swine influenza are similar to other strains of influenza: fever, chills, aches, cough and congestion. The only thing that's being reported as out of the ordinary is some vomiting and diarrhea as well.
So, as you did last January, wash your hands and cover your mouth with the crook of your elbow if you cough or sneeze. If you get sick, yes, call your doctor, but treat yourself with rest, fever reducers (not aspirin for children) and plenty of fluids. We always have to worry about the very young and old, but again, we haven't seen swine flu in these groups yet. We also have to worry about our patients who have some chronic medical problems like cancer, which can compromise their immune system. However, this, too, is nothing new.
You may have more cause for concern if you recently traveled to Mexico and then got ill, but the CDC is keeping doctors up-to-date on how to test patients. Also, while swine flu can be treated with the antiviral drugs zanamivir and oseltamivir, demanding them or stocking up on them is going to cost you (and our fragmented healthcare system) lots of money for very little benefit at this point. The government already has ample stockpiles of antiviral drugs that can help beat this bug should the outbreak get worse.
While it's true that the Homeland Security Secretary Janet Napolitano declared a "State of Emergency" over the outbreak, she stressed that it isn't anything more than a procedural move to free up resources for those who may need them. So with thoughtful preparedness and surveillance by health agencies, local awareness among citizens and doctors, and more than just a little luck, we can all hope this will pass fairly quickly.