Some of you may have noticed I’ve been quiet for a few days. That’s because I’ve been working on the elements of my new Medical Lessons site. Among the things I’ve learned since starting this project in mid-November, just 2.5 months ago, is this –
Blogging is like practicing medicine in some surprising ways:
1. You learn how to blog by doing it;
2. What you say, and how you say it, makes all the difference;
3. Some people will appreciate your style, others won’t;
4. You have to be careful, details can make things go right or wrong;
5. There’s never enough time in the day;
6. It’s fun, interesting and rewarding (largely in intangible ways);
7. You have to stay current to be good at it;
8. You get to interact with all sorts of people;
9. You’re constantly learning;
10. I love it.
As soon as the new site is ready, you’ll find the directions automatically.
Not to worry – I’ll be writing lots, then and there. Once the formatting’s done I’ll have more time to spend on ideas and information.
Waiting to see her, I sat in a floral fabric chair by a matching wood veneer coffee table strewn with worn magazines – Architectural Digest, Better Homes and Gardens and some old Time issues – I couldn’t help but think of how I was feeling seven years ago.
Then I was anxiously waiting to know my blood counts – the white cells, red cells and platelets – to see if they were sufficient for my scheduled chemotherapy.
That January, my white blood cells were so low that some doctors thought I should enter the hospital for IV antibiotics. (I declined.) My mouth was so full of sores I could hardly speak or eat. My hair was gone and I wore a strange wig. My right arm was broken (yes, I’m right-handed) so I couldn’t write or type. I was pale, weak with anemia and covered with bruises.
Chemo-brain, which I’d never learned about in med school, was just starting to set in. Before then, I’d always taken pride in keeping up with medical and science journals. But I could barely muster the energy to take a glance at those heavyweights. Even regular magazines appeared fuzzy, a scary symptom for an oncologist who knows too well that breast cancer cells can spread upstairs.
I wanted my next treatment. I wanted to get it over with, to put the breast cancer behind me.
After a while my oncologist stepped out into the waiting area and guided me to the hall by her office. “The cells are low,” she said. “We’ll have to wait another week, that’s all.”
I knew she was right. But a week seemed like a lifetime to me then.
I understood that giving chemotherapy suppresses the bone marrow, the body cavity where blood cells form. If my white cells dropped any lower, I’d be at serious risk for bacteria in the blood or invasive yeast in my mouth and throat. If the treatment reduced the red cell-forming elements in the marrow, I’d become more anemic. Already I was on a medication that affected the function of platelets, the blood-clotting cells. If the platelets fell further, I’d be at greater risk for bleeding.
I had no choice but to wait. So I did. The next week I got my treatment, and we were back on track, at least for a while.
Today, sitting in a similar chair, I calmly read the arts section of the newspaper and started working on the crossword. I’d tucked the New England Journal of Medicine into my bag, thinking I should read that, but it didn’t seem right. I wanted to remember what it’s like to be a patient who doesn’t know if she’ll make it through.
Several of my friends, mainly women, are affected now by cancer that’s spread. They go to see their oncologists regularly, and sit and wait for their blood counts, and sometimes get their treatments. Most hold undeniably upbeat, positive attitudes. But the reality is tough-going, day-to-day and month after month, with no easy end in sight.
How much easier it is to look back on a situation – a tumor – that was removed in an early stage. My cancer treatment wasn’t easy, but I don’t regret it for a second.
When my oncologist took me into her office today we chatted for a while and then she examined me.
“Come back next year,” she said.
In my medical storybook, it doesn’t get much better than that.
Something I learned as a medical intern is that there are worse things than dying.
As I recall, it was sometime in April, 1988. I was putting a line in an old man with end-stage kidney disease, cancer (maybe), heart failure, bacteria in his blood and no consciousness. Prince was on the radio, loud, by his bedside. If you could call it that – the uncomfortable, curtained compartment didn’t seem like a good place for resting.
An attending physician, a smart guy I respected, approached me as I completed the procedure.
“It’s kind of like Dante’s seventh circle,” he noted.
Indeed. A clear, flexible tube drained greenish fluid from the man’s stomach through his nose. Gauze covered his eyes, just partially. His head, hands and feet swelled with fluid. A semi-opaque hard-plastic instrument linked the man’s trachea, through his paper-taped mouth, to a noisy breathing machine. His skin, barely covered by a stained hospital gown, was pale but blotchy from bleeding beneath. An arterial catheter inserted by his wrist, just where I might have taken his pulse had he been healthier. A fresh adhesive covered the cotton gauze and brownish anti-bacterial solution I’d placed over his lower right neck.
“Yeah,” I said as we walked out of the room to review another patient’s chart.
I wondered if the ICU staff would mind my changing the radio station, just in case the patient could hear but not tell us he preferred WQXR.
“There’s no way I would let this happen to me,” I remember thinking.
This month, a report in the ACS journal Cancer indicates that most U.S. physicians don’t talk with their patients about end-of-life issues until death is imminent, if they do so at all.
The study, based on canvassing over 4000 doctors who care for cancer patients in California, North Carolina, Iowa and Alabama revealed that only a minority of physicians would raise the subject of a DNR (do not resuscitate) order or the possibility of hospice care for a patient with metastatic cancer with a life expectancy of 4-6 months. The article has generated considerable, appropriate attention in the press and for good reason – it bears on health care costs, patients’ rights, doctors’ communication and time constraints and a host of points relevant to the practice of medicine in 2010.
For purposes of this post, today, what I’ll say is this much:
Don’t wait for your doctor to talk to you about death and dying. Be proactive about your wishes and the kind of care you wish to receive, especially if you’re sick with a serious medical condition. Take the initiative – document your end-of-life preferences as best you can, according to the law of your state, and tell your physicians about any limits you’d like to set on the care you might receive.
It’s a conversation worth having, early.
Here’s a very-partial list of resources for people who’d like to learn more about advance directives, living wills, DNR orders, hospice care and other end-of-life concerns:
HBO’s True Blood received an invigorating, early renewal notice last summer; a third season will come out in June. And on film 2009 witnessed a quick, hungry revisit from Twilight, among others vampire flicks. Just this month, Ethan Hawke revealed himself in Daybreakers as Hollywood’s first hematologist-protagonist.
So it seems that now’s the perfect time to talk about it –
Blood, always my favorite Aristotelian humor, comprises two elements – plasma (a hazy yellowish fluid) and cells. The plasma bathes the blood cells in a mixture of salts and proteins as they travel within the walls of blood vessels throughout the body (the circulation) and in the chambers of the heart. Plasma proteins include some hormones, enzymes, clotting factors and antibodies.
Let’s start with some basics on the cellular components of blood: white blood cells, red blood cells and platelets:
neutrophil as seen in a peripheral blood smear, Wikimedia Commons (WC)
White Blood Cells
White blood cells (WBCs), physically larger than the rest, serve as warriors against infection. These include a cast of various types, each with a distinct role in battling germs. The most familiar white cells in the “peripheral blood” – as doctors refer to fluid passing through arteries and veins – are neutrophils, lymphocytes and monocytes. Two other forms, eosinophils and basophils, emerge from the bone marrow and typically travel in lesser numbers.
scanning micrograph, red blood cells, WC, adapted NIH image
Red Blood Cells
Red blood cells (RBCs), the most abundant and usually uniform blood cells, carry and deliver oxygen throughout the body. Mature, circulating red cells are disc-like in shape, indented on each side, and lack nuclei. They’re loaded with hemoglobin, a complex, iron-laden molecule that binds oxygen and turns blood red.
When someone receives a transfusion, that’s usually a unit of packed red blood cells, concentrated red cells from which most of the donor’s white cells, platelets and plasma have been removed.
Platelets are tiny, blood clotting cells. Like red cells, these cells circulate without nuclei, but they’re irregular in shape and sticky, loaded inside with plug-forming proteins and on their surfaces with adhesive receptors, ready to clump at the nick of a chin or a pinprick.
Both cancer and its treatments can affect the bone marrow, where blood cells are formed. Some tumors, like leukemia and lymphoma, arise from blood cells. Other medical conditions cause blood cell problems, too. For example, chronic kidney disease causes anemia, and HIV infection leads to reduced T-lymphocyte counts.
For all these reasons, I think it’s helpful for everyone to have some understanding of blood and blood cells – any discussion of stem cells, bone marrow and transplantation presupposes some knowledge of these basics.
More to follow!
Meanwhile, if you’re searching for more blood info on the Web, I suggest these sites:
I like this post, and Thomas Goetz’s Decision Tree approach in general, because it emphasizes each person’s responsibility for his/her health.
For a patient to “own” her body in the context of modern medicine requires that she engage, very actively, in decisions. The question, then, is how she might find the information she needs to choose among treatments (including to forgo treatment) when the situation is complicated, such as if she already has a chronic disease and suddenly faces an acute injury or sudden, catastrophic illness.
An unfortunate caveat is that some (perhaps most?) medical conditions can’t be controlled by diet, exercise or other lifestyle modifications. Read comment at HuffingtonPost
Giving blood is something that’s close to my heart.
When I was 14 years old, I received seven units of packed red blood cells from strangers during and after spinal surgery. In 2003 when an orthopedist bravely cut the steel rod fused to my spine, readjusted it and inserted new hardware, I got another four units. So I’m keenly aware of this mitzvah, of giving blood. It saves lives.
As a practicing hematologist through 2006, I wasn’t aware of this phenomenon. Over the past week, I’ve scoured blood journals, blood-banking websites and even contacted a few leaders in the field, but found few doctors familiar with the tradition or what’s at least a trend as tracked by the all-knowing Source:
Google search Timeline view (1-16-10)
It’s not clear exactly when this practice, now seemingly integrated with nationwide MLK National Day of Service events, began. The Orlando Sentinel published an article linking blood donation with MLK on January 14 1988:
Florida Blood Services campaign image January 2010
Donors giving blood from 2 to 7 p.m. Monday at the American Red Cross center, 341 White St., Daytona Beach, will be donating in memory of Dr. Martin Luther King Jr.
Each person will sign a scroll saying they donated blood in King’s memory. That document will be presented to Bethune-Cookman College during a special assembly Wednesday, said JoAnn Lord, Red Cross spokesman.
In response to a similar blood drive, Coretta Scott King wrote: ”The national holiday is a time for personal recommittment to do something — to reach out to your brothers and sisters in the spirit of our common humanity. Certainly the giving of blood so that others may live is a very important way of committing yourself to others.”
Today I spoke with Daniel J. Eberts, corporate communications manager for the Florida Blood Services. Dan’s been working with that agency for over 22 years. “The goal is to create awareness of the ongoing need for blood,” he says. The agency collects blood every day of the year except for Thanksgiving and Christmas, he notes.
“Dan the Bloodman” – as Eberts is sometimes called – is not shy in his passion for blood donation. Rather, he’s on YouTube, singing on how you, too, can give blood.
On recent MLK Days the Florida agency has collected between 500 and 700 pints of blood, he reports. The holiday presents a special opportunity to gather additional, much-needed minority registrants for the National Marrow Donor Registry.
Eberts emphasizes how easy it’s become to sign on as a potential donor. “All you need is some cheek swabs,” he says. “There’s no blood sample required. Now, most of the hassle is with the paperwork.”
Here are some resources for people who’d like to know more about giving blood:
The National Marrow Donor Program helps patients with leukemia and other conditions find matching bone marrow donors. The agency provides, also, financial assistance to some who can’t afford needed transplants.
January is National Blood Donor Month. For those who can give, it’s never too late – the need is year-round.
Into my Google Reader this morning came a post from Biophemera (an intriguing blog at the interface of art and science). Scientist-artist-blogger Jessica Palmer offers a provocative clip featuring Alex Lundry, a self-described conservative political pollster, data-miner and data visualizer.
“These charts are meant to illustrate the political power of data visualization. It’s a discipline that’s only just beginning to bloom as a messaging vehicle…
“So what changed, why now?” he asks rhetorically.
“Well of course the internet…What’s really changed is data. We capture more data, we store more data and more data is available to us in machine-readable parsable format. So it’s really gotten to the point where anybody with a computer can create a data visualization easily enough…
“Here are a few quick lessons in graphical literacy…You’ll see that messing around with the origin and axis can make unimpressive growth look pretty amazing, right?…
Scary stuff. We’re vulnerable to brainwashing by pie graphs with pretty colors. Men are hired to collect and represent data with a particular aim. And there’s more to come this way, faster than ever by twitter.
So why here? Why a Medical Lesson?
Because the same is true for health information.
One of the first rules of medicine is knowing your sources. Before you make a decision, consider: did you read or hear about a treatment in a textbook, in a reputable journal, at a scientific meeting or over lunch with a representative from a pharmaceutical company?
Immersed in data as we are, it’s tempting to grasp at the best-presented material regardless of its intrinsic value. Nifty graphs can persuade or fool even the best of us.
1. Know your doctor – be aware of industry ties, academic connections and other sources of pressure to perceive or publish results more clearly than they are;
2. Distinguish ads from articles about health – the difference is not always clear, especially on-line;
3. Read the fine print and identify the perspective of who’s depicting “data” in charts and graphs – when medical information comes onto your TV screen or magazine page, there’s a good chance someone’s got something to sell you.
1. Remember the difference between peer-reviewed journals and PeerView Press (a CME company with a host of industry sponsors, one of many such that provide free, neatly-packaged information targeted to busy doctors);
2. Take the trouble to read the methods and statistical sections of published papers in your field – your patients are counting on you to discern good studies from bad;
3. Don’t forget we’re human, too. We’re vulnerable, drawn to promising new results –
As a trained hematologist (blood doc), oncologist and breast cancer survivor, I couldn’t resist checking this out. Here’s what I discovered:
The link traces to MommaSaid.net. Turns out MammaBlogger Jen Singer counts herself among lymphoma survivors in remission. Another mom in remission, I might add –
Jen clues us in on a new breast cancer awareness campaign that migrated to Facebook but three days ago – breast cancer awareness ? I updated my Status with my Bra colour ? and, as of this moment, has over 57,000 fans. Her solidarity with breast cancer patients and their loved ones is very real. She’s at increased risk, among other reasons for her sensitivity to the issue.
Jen plugs for greater public consciousness of other malignancies including tumors that arise from blood cells – conditions like non-Hodgkin’s lymphoma, leukemia and myeloma. She’s particularly concerned about a young neighbor, a teenager with recurrent leukemia, who needs blood now.
“So, I ask you this: Please put your blood type in your Facebook status and ask your friends to do so, too, to raise awareness for lymphoma and leukemia. Mine is O+, a blood type…
I was blown away by this, and impressed. What social media might do for the practice of hematology!
With just a few clicks at the keyboard and some thousands of on-line connections, one lymphoma survivor has improved the chances that one girl with leukemia will get the platelets she needs. And, maybe thanks to the Facebook blood typing information campaign, more potential blood donors will connect with those who need cells in the future.
Yesterday, Dr. Pauline Chen reported in the New York Times on virtual visits, a little-used approach for providing care to patients hundreds or thousands of miles apart from their physicians.
Telemedicine depends on satellite technology and data transfer. It’s a theoretical and possibly real health benefit of the World Wide Web, that giant, not-new-anymore health resource that’s transforming medicine in more ways than we know. Chen writes:
Telemedicine has the potential to improve quality of care by allowing clinicians in one “control center” to monitor, consult and even care for and perform procedures on patients in multiple locations. A rural primary care practitioner who sees a patient with a rare skin lesion, for example, can get expert consultation from a dermatologist at a center hundreds of miles away. A hospital unable to staff its intensive care unit with a single critical care specialist can have several experts monitoring their patients remotely 24 hours a day.
I’m reminded of three things:
First, my recent visit to my internist’s office on East 72nd Street, a short walk from my home. When I see my doctor she smiles warmly, shakes my hand firmly and examines me from head to toe. She takes my blood pressure with an old-fashioned sphygmomanometer, looks at my eyes and into my throat, applies a stethoscope to my scarred chest as she listens to my heart and lungs, and palpates – “feels” in doctorspeak – my lymph nodes, liver and spleen. All that along with a neurological exam; she sees how I stand, walk and balance my head over my torso.
Second, my husband’s conversation with his mom yesterday evening, via Skype, transmitted between his laptop in our living room and her computer in a Buenos Aires apartment.
Third, some history from the 1950s – on how early computer scientists envisioned the future of medicine. From my master’s thesis at Columbia University’s Graduate School of Journalism, on how the “How the Internet is Changing the Practice of Oncology”:
When Vladimir Kozmich Zworykin addressed the 1956 assembly on “Electrical Techniques in Medicine and Biology,” he marveled at the technological feats of computers, and envisioned how these new instruments might be applied in health care. Zworykin, an inventor of television …was privy to the newest developments in applied science.
…He’d seen closed-circuit “Telecolor Clinics” that transmitted the latest cancer research news to physicians in cities along the eastern Seaboard and Great Lakes Region. A color, television microscope linking monitors in Philadelphia, Washington and Baltimore enabled doctors in one city to identify cancer in another…
We’re back in the future! My take on telemedicine includes three components; each corresponds to one association above.
1. Telemedicine is not the same as real medicine. I like seeing my doctor in real life and am reassured by her true presence in the room.
Besides, a hands-on exam has some tangible benefits. A good doctor, who knows how breathing sounds should sound, confident in her examination skills, might skip an x-ray she’d otherwise order. A competent hematologist, skilled in palpating her patients’ lymph nodes, liver and spleen, could spare us the costs and risks of some CT scans and MRIs.
Of course, the doctor’s hands should be clean… (a topic unto itself)
2. Virtual visits might help. The reality of medicine requires innovation and compromise – making the best of a sometimes difficult situation.
As Pauline Chen points out in her column, there’s a shortage of doctors affecting some, particularly rural, parts of the U.S. Policy experts anticipate the problem won’t go away with current health care reform measures, and some business reports warn the situation will get worse. Telemedicine, while not ideal, might ameliorate this effect and make a positive difference in the health of people living far from major medical centers. The technology could, indeed, connect patients with specialists who would otherwise be out of reach.
3. The future of medicine will embrace some elements of telemedicine. We just need to fine-tune the process.
As I see it, Internet or satellite-directed medical examinations are most promising for image and data-centric fields like radiology and pathology. It’s telling that Pauline Chen’s first example pertains to dermatology (skin diseases). Sure, I think a far-away expert’s view of a skin lesion could be helpful – it might reassure some that a mole or a rash is nothing to worry about, or inform them that indeed, they should hop on a train to Memphis. For patients with benign-appearing lesions, telemedicine could save costs and time in travel and unnecessary appointments, besides biopsies.
But I’m wary of implementing this tool in primary care areas and interventional fields like surgery and obstetrics. The prospect of delivering babies upon real-time instruction by doctors in cities far away is not what I’m hoping for, at least not for my kids’ kids.
Here’s my short list, culled from newsworthy developments that might improve health, reduce costs of care and better patients’ lives between now and 2020, starting this year:
1. “Real” Alternative Medicine. By this I don’t mean infinitely-diluted homeopathic solutions sold in fancy bottles at high prices, but real remedies extracted from nature and sometimes ancient practices.
2. Chemotherapy Pills. Why get treatment through an intravenous catheter if you can pop some pills instead? To be clear, some of the best and most effective cancer therapies require infusion. And just because a medication can be taken by mouth doesn’t mean the side effects are trivial.
But quite a few targeted therapies, like Gleevec or Tarceva, besides some old-fashioned drugs like Leukeran and new forms of old agents, like Xeloda, work just fine in pill or capsule form. Many patients, especially those with limited life expectancies, would gladly choose an oral combination therapy, the sort of medication cocktail taken by AIDS patients only for cancer, instead.
A gradual shift from intravenous to oral therapies for cancer would transform the practice, and economics, of oncology as it’s practiced in North America.
3. Environmental Hazards. Where we live, what we carry and ingest surely affect our bodies and our cells. We’ve learned about Bisphenol A (BPA), an estrogen-like molecule that leaches from plastic food containers into the foods we eat.
Now, we should expect and demand more information on what’s really in the water, so to speak. And in our sunscreens, and in so many chemicals we use routinely and without hesitation.
4. Health Informatics. The Pew Research Center reports that two thirds of American adults are going on-line for health information.
But that’s only part of the story. Sure, the internet makes it easier for people to learn about medical conditions, but the same applies to physicians. In principle, the internet should help doctors stay current, make sound decisions and provide better care.
Electronic health records (EHRs) will, in the long run, reduce costs from duplicate testing, faxing and re-faxing of reports and, more importantly, lessen errors from illegible or incomplete medical files that are too-often inaccessible. Over the next decade, we’ll see how patients find value in their own records (or don’t), how privacy issues play out, and if electronic documentation of millions of health reports provides, in itself, new information on disease trends and treatment effects.
For a cancer patient undergoing therapy, the current standard involves multiple scans at intervals of months or even weeks, to see how a tumor is responding, or not, to a particular treatment regimen. Once in remission, some people undergo additional periodic studies just to be sure there’s no evidence for the tumor’s recurrence.
The news is that easier, more accurate and less dangerous methods for monitoring tumors are forthcoming. Using microchip-based detectors doctors can, using just a few drops of blood, measure the extent of a colon or lung cancer and examine how tumor cell genetics change during treatment. Over time, this and similar technologies will improve and, with standardization in manufacturing, come down in price.
6. Palliative Care. Not everyone wants to spend the last days of his or her life in an ICU hooked up to a ventilator with tubes and intravenous lines. But few people prepare for the end of life when it happens in a hospital, and doctors don’t generally talk about it in advance.
Palliative care, the kind of medicine aimed at treating symptoms, rather than achieving cure, is underused in the United States. Over the next decade, we should see better education of doctors in this essential field in cancer medicine, and of the public, too.
7. Cancer Vaccines. These work by immunizing a person against a tumor just as one might, instead, inoculate a person with a modified virus or bacterium to stave off infection.
Cancer vaccines would stimulate and harness the body’s normal immune cells to confront and eradicate cancer cells. This year, the FDA will take another look at Provenge, a vaccine that’s designed to treat men with prostate cancer. Similar biological agents are in the works for most other tumor types.
We’ll be hearing more on these innovative drugs that, so far in clinical trials, appear to have few side effects. Whether the vaccines are effective – if they can shrink tumors – we’ll have to wait and see.