Posts Tagged ‘Conditions and Diseases

11
Nov
10

Cancer reading of interest

I saw a review today in the NY Times of Dr. Siddhartha Mukherjees’s book, The Emperor of All Maladies. Supposedly it’s a “biography” of cancer. Evidently he recounts the changing historical conceptions of cancer and the efforts to deal with the disease. Since I worked in the field for 36 years I guess that qualifies as being a part of that history, or at least the recent part.

What interests me is that the reviewer, Janet Maslin, quotes the doctor as saying in the book:

Cancer is a flaw in our growth, but this flaw is deeply entrenched in ourselves…We can rid ourselves of cancer, then, only as much as we can rid ourselves of the processes in our physiology that depend on growth — aging, regeneration, healing, reproduction.

Maslin criticizes the statement as being an “oversimplification”. In what respect? I fully agree with the statement in that cancer comes from the errors inherent in our physiological cell processes or damage to those processes induced by outside influences. Cancer could only be eliminated if our cells ran perfectly for decades or were able to fix every error perfectly. Our cells do a heck of a job, but the reality is that over the long course of our lives errors creep in. I don’t think that overcoming flaws in basic processes can be done (although I don’t want to rule out amazing technologies that might be developed many decades out), so, as I’ve said before, goals and expectations about cancer need to get real.

There’s a kind of upside to the magnitude of the cancer problem. The fear of cancer had driven people to open up their wallets and the treasury to do a huge amount of bio-medical research. All of it contributes to the vast amount of knowledge needed to deal with many maladies and to understand our very nature. There’s still a long way to go. I sometimes wonder where we’d be in life knowledge and medicine without the terror of cancer. Human beings don’t seem very interested in knowledge if it doesn’t have a direct benefit to them.

p.s.: When I was working I’d whip out a credit card and order a book like this from Amazon immediately. Now, however, I’ve got a library card. I went online and placed a hold on the book. After 15 people ahead of me read one of the copies I’ll get hold of it and save the $16.95.

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29
Jun
10

Uh-oh. In the minority…again

After my last post about the Australian scientist, Frank Fenner’s, apocalyptic prediction that humans would be extinct in 100 years — give or take a few — I decided to look around at how optimistic or pessimistic others are about the future. I didn’t have to look far. Today I ran across a survey by the Pew Research Center for People and the Press for Smithsonian.com about how optimistic Americans are about the next 40 years.

Well, Americans are plenty optimistic. The Pew summary starts: “Imagine a future in which cancer becomes a memory, ordinary people travel in space, and computers carry on conversations like humans.”

OK, I can do that! After all, I’ve been reading forecasts like that going back the the 1950s. Popular Science magazine did a lot of lists of what was going to happen and great drawings of people doing things like riding moving sidewalks. And, sure enough, 50 years later when I go to the airport there’s a moving sidewalk.

The other part of the survey intro is not so rosy, however: “Now imagine a darker future – a world beset by war, rising temperatures and energy shortages, one where the United States faces a terrorist attack with nuclear weapons.” Indeed, the survey is a mixture of up and down votes.

Many Americans see dramatic scientific and technological advancements on the horizon, with big developments in medicine, engineering, space travel and computers. However, despite the widely anticipated scientific breakthroughs – including the elimination of fossil fuels and gas-powered cars – the public foresees a  grim environmental future. Rising world temperatures, more polluted oceans and severe water shortages in the U.S. are seen as definite or probable over the next 40 years.

The survey is worth taking a look at. For my money, however, many of the questions frame the issues in such simplistic language that I wonder what people really intend with their limited answer choices. For instance, having been in the field of cancer public health for over 35 years I cringe when I see people were asked: “How likely do you think it is that…there will be a cure for cancer?” Seventy-one percent answered they thought definitely or probably cancer would be cured.

When I went to work for a cancer organization 36 years ago we had a slogan: “We’re going to wipe out cancer in your lifetime.” Today members of the cancer science and medical community are just happy that a sustained downward trend in cancer mortality is finally occurring. We stopped talking about “wiping out” cancer about 20 years ago. And oncologists are loath to even use the term “cure” when talking about outcomes for disseminated cancer. In fact, few people know it, but the goal of many in the cancer community these days is to make cancer predominantly a chronic disease rather than an acute, fatal disease. In other words success over the next few decades would be to enable the majority of patients with a wide range of cancer types to survive one or more bouts with the disease and die of something else. That’s a laudable goal, but it’s not anywhere near “wipe out.”

To think of cancer as one disease for which there will be a universal “cure” — that’s what the phrasing of the question implies — is kind of a throwback to the naive idea of several decades ago that cancer can be eradicated. It’s a basic misunderstanding of the disease. Unlike communicable disease, cancer is not something that attacks you from outside; it’s a malfunction of essential processes at the core of cellular life. I recall a breast cancer researcher who said every time a cell divides there’s a little risk of heading towards cancer.

Progress is being made these days, but the lengthy process of testing new approaches not to mention the enormous costs associated with recent cancer treatments means that there a huge obstacles besides the disease itself to having a big impact on the population. So, the last day I was in my office when I retired six months ago, I found myself reassuring some young staff who were just starting their careers that there would still be a big cancer problem for decades to come. In other words, they’re not going to have to change careers because a sudden “cure” arrives.

The Pew survey suggests to me that the public is finally adjusting to the reality that dealing with cancer will take much longer than anyone could imagine a few decades ago. The figure showing that in 2010 71% of respondents expecting a cure is down from 81% in 1999. A drop in the number of people expecting a cancer cure in the next 40 years may not be “pessimism” but a more realistic assessment of the situation instead.

I think people who have in-depth information about any of the questions asked in the Pew survey would have questions about interpreting what the answers mean. While surveys like this tend to suggest optimism is good and preferable to pessimism, the fact is that skepticism often reflects a grasp of reality.

Among the other opinions expressed by the survey group are:

  • In 40 years computers will converse like people.
  • Artificial limbs will work better than natural ones.
  • Most of our energy will not come from oil, coal and gas.
  • The world will get warmer.
  • We’ll have a major energy crisis.

These findings reflect the subjects’ attitudes and aspirations than they are an analysis of the future. Most of the challenges to be faced during the 21st century will be massive processes not seen in the history of the Earth. There’s really no precedent for the confluence of forces unfolding in our time.

One final thing. Forty-one percent of the respondents to the Pew survey expect Jesus Christ to return to Earth some time in the next forty years. That would make moot the dire speculation by Fenner that the human species will become extinct in the next 100 years wouldn’t it?

27
Mar
10

do patients need doctor navigators to use the internet?

In the March 25 New England Journal of Medicine Drs. Pamela Hartzband and Jerome Groopman of published an opinion piece titled “Untangling the Web — Patients, Doctors, and the Internet” in which they expressed a lot of concerns about how the internet is putting patients in touch with a lot of questionable information about disease and about how it is changing the doctor-patient relationship in an adverse way.

Since, overall, my views are about 180 degrees in the opposite direction, I’d like to quote some of their remarks and comment on them. (I recommend reading the full article so the context isn’t neglected.)

Information traditionally flowed from doctor to patient; the physician described the genesis and course of a disease and the options available for treating it. Often, pamphlets were provided to reinforce the doctor’s explanation and advice. The patient might then receive additional input from family and friends, usually in the form of anecdotes about people who faced similar clinical situations.

I can only say from my experience that the first sentence about information flowing from doctor to patient is pretty ideal. When I started working at the community level for a large national cancer organization in the ’70s there were doctors who not only didn’t explain the disease well but there were some who chose, on the basis of their judgement about the emotional frailty of the patient, not to tell some patients they had cancer. They’d tell a spouse or adult child perhaps. Fortunately, things have improved and, hopefully, the “don’t tell” practice has been replaced by informed consent. Still, I think for many situations the amount of information going to patients is limited by the short time allocated to face-to-face interaction with doctors. I am a Kaiser Permanente client. They have implemented email to doctors, online lab results, and an online information resource. The docs don’t give full explanations unless you press them on it.

Other patients whose diseases have no ready cure are drawn to chat rooms and Web sites that may make unsubstantiated claims — assertions that macrobiotic diets cure aggressive lymphoma, that AIDS can be treated with hyperbaric oxygen, that milk thistle remedies chronic hepatitis, and myriad other fallacious claims. Falsehoods are easily and rapidly propagated on the Internet: once you land on a site that asserts a false rumor as truth, hyperlinks direct you to further sites that reinforce the falsehood. Material is perceived as factual merely because it is on a computer screen. We sometimes find ourselves in the uncomfortable position of trying to dissuade desperate and vulnerable patients from believing false testimonials. Doctors may be perceived as closed-minded, dismissive, or ignorant of “novel therapies” when they challenge such Internet rumors.

Firstly, there is absolutely nothing new about charlatans and doctors who have been peddling snake oil and gimmick cures for generations. Again, when I went to work in cancer control my organization had a major effort to combat “quackery.” Many, many cancer patients were getting all kinds of bad advice and misinformation from naturalistic health magazines and other sources. (For a thorough tour of the quackery hall of infamy, see Dr. Steven Barnett’s site Quackwatch.) People by the thousands were going to clinics in Mexico for cancer treatments no responsible doctor would perform. This was rampant decades before the internet. There was an epic, nationwide legislative battle over Laetrile, the marketing name for amygdalin from apricot pits. Despite the best efforts of medical and public health organizations, especially in California, Laetrile production was legalized in 27 states . The arguments about “freedom of choice” from the ’70s seem to have echoed down the decades and have turned up again in the rhetoric against health reform, especially in the condemnation of  comparative effectiveness determination.

Secondly, even highly authoritative institutions have to change their tune once in a while. When I joined cancer public health in the ’70s the medical community almost universally rejected the idea that food and nutrition had anything to do with the prevention of cancer. People who talked about a relation between nutrition and cancer were sneered at and called the “fruits and nuts” crowd. Thirty-five years later as I approached retirement I had to chuckle inwardly many times about the current enthusiasm for the view that diet and nutrition are key to the prevention of much cancer. These days ya gotta eat your greens and grains!

Thirdly, doctors themselves are not always reliable sources of informaiton. That’s why we have second and sometimes third opinions. Drs. Hartzband and Groopman cite anecdotes about people who believe unsubstantiated information from the internet and suffer anxiety or waste doctors’ time. But I think most of us who have been around a few decades have our own fist full of stories from our own experiences or those of friends and acquaintances where doctors have failed to diagnose something or misdiagnosed situations, where lab tests have been wrong or complex treatments have been bolixed up in a hospital. I think the public knows all too well from well-publicized reports about medical errors by the Insyitutes of Medicine that the medical system itself is far from fault free. With regard to health it’s a risky world, even in the bosom of the medical establishment.

The article concludes:

As physicians, we are struggling to figure out how best to use this technology in the interests of our patients and ourselves. Although the Internet is reshaping the content of the conversation between doctor and patient, we believe the core relationship should not change. A relative recently asked us, “What can you possibly learn from your doctor that is not available on the Internet?” We suspect we’ll hear such radical sentiments increasingly in the future. Knowledge is said to be power, and some of the past imbalance of power between patient and doctor may be equalized. But information and knowledge do not equal wisdom, and it is too easy for nonexperts to take at face value statements made confidently by voices of authority. Physicians are in the best position to weigh information and advise patients, drawing on their understanding of available evidence as well as their training and experience. If anything, the wealth of information on the Internet will make such expertise and experience more essential. The doctor, in our view, will never be optional.

Uh, count me among the radicals. Let me say that the doctors are not totally negative about the internet, but their overall conclusion is that every patient should vet all their information through their physician. It sounds like they’re saying — like other professionsals who’ve had their domain disrupted by the internet — we’d all be better off if the internet went away and we could return to the status quo ante.

I’m just here to assert that that’s just not going to happen. The genie has been out of the jug for years and it’s not going back in. The Pew Internet and American Life Project has been documenting for years now the growing reliance of the public on the internet in health matters. Doctors just don’t seem to get it that there are needs that they’re just not satisfying. The use of digital media for health information and support is only going to increase, and rapidly.

My position is not that doctors are somehow unnecessary. However, I do believe that ordinary citizens are capable of knowing much more and doing much more about their own personal health and digital systems are an evolving platform for that. And after the so-called “health reform” slugfest we’ve been through I’m even more convinced that we all need to be more autonomous. We can’t continue to depend on a cabal of politicians, doctors, hospitals, insurance and pharmaceutical companies for our health. It’s just too important.

My suggestion to physicians is, instead of promoting a somewhat idealized notion of the doctor-patient relationship unsullied by the internet, why not work with citizens, professionals, and organizations to make the internet a better platform for the public and for doctors and patients to work together around their health issues? There are many support measures that can be undertaken. If docotors are worried about accurate information then why not build a comprehensive, evidence-based, easily accessible, user-friendly information resource? Medpedia, a project started by a consortium of medical and public health schools, is an interesting and constructive exercise along this line. Only thing is, the site is not public-friendly and so far the effort appears not to have attracted much involvement from anyone but professionals.

The concern about people not being able to critically evaluate health information is certainly legitimate. In fact, evaluating ALL internet information is an issue. But where is the support system for helping people learn how to do that? Why don’t doctors and organizations get busy spelling out some guidelines for evaluation and get them disseminated through many channels? That would be constructive and doable.

There already is a kind of parallel world of information and tools starting to envelope the health sector. (Tip: If you think the internet is something, check out the apps in the iPhone App Store supposedly intended for medical professionals but perfectly downloadable by anybody.) It’s like the way the blog-o-sphere enveloped journalism. After a lot of pining for their old, defunct newspapers, more far-thinking journalists have learned how to work with digital media and to reclaim their futures. Something similar is happening in medicine and, hopefully, perceptive medical professionals will learn how to work with it rather than try to will it away.




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