You’re Sick and I’m Not, Too Bad

“The insurance market as it works today basically slices and dices the population. It says, well you people with medical conditions, over here, and you people without them, over here…

– Jonathan Cohn, Editor of The New Republic, speaking on The Brian Lehrer Show, February 16, 2010*

There’s a popular, partly true, sometimes useful and very dangerous notion that we can control our health. Maybe even fend off cancer.

I like the idea that we can make smart choices, eat sensible amounts of whole foods and not the wrong foods, exercise, not smoke, maintain balance (whatever that means in 2010) and in doing so, be responsible for our health. Check, plus.

It’s an attractive concept, really, that we can determine our medical circumstances by informed decisions and a vital lifestyle. It appeals to the well – that we’re OK, on the other side, doing something right.

There is order in the world. God exists. etc.

Very appealing. There’s utility in this outlook, besides. To the extent that we can influence our well-being and lessen the likelihood of some diseases, of course we can!  and should adjust our lack-of-dieting, drinking, smoking, arms firing, boxing and whatever else damaging it is that we do to ourselves.

I’m all for people adjusting their behavior and knowing they’re accountable for the consequences. And I’m not keen on a victim’s mentality for those who are ill.

So far so good –

Last summer former Whole Foods CEO John Mackey offered an unsympathetic op-ed in The Wall Street Journal on the subject of health care reform. He provides the “correct” i.e. unedited version in the CEO’s blog:

“Many promoters of health care reform believe that people have an intrinsic ethical right to health care… While all of us can empathize with those who are sick, how can we say that all people have any more of an intrinsic right to health care than they have an intrinsic right to food, clothing, owning their own homes, a car or a personal computer? …

“Rather than increase governmental spending and control, what we need to do is address the root causes of disease and poor health.  This begins with the realization that every American adult is responsible for their own health.  Unfortunately many of our health care problems are self-inflicted…

Now, here’s the rub. While all of us can empathize, not everyone does. And few citizens go to medical school. Some, uneducated or misinformed, might sincerely believe that illnesses are deserved.

So let’s set some facts straight on real illness and would-be uninsurable people like me:

Most people who are sick – with leukemia, diabetes, osteogenesis imperfecta, heart disease, multiple sclerosis, scoliosis, glycogen storage disease Type II, depression, Lou Gehrig’s disease, sickle cell anemia, rheumatoid arthritis or what have you – are not ill by choice. They didn’t make bad decisions or do anything worse, on average, than people who are healthy.

Rather, they became ill. Just like that.

The idea of an insurance pool is that when everyone in the community participates, whoever ends up with large medical expenses is covered, explained Jonathan Cohn. When contributions come in from all, including those who are healthy, funds are sufficient to provide for the sick among us.

As things stand, the insurance industry divides us into likely profitable and unprofitable segments. “So you know if you’re one of the people born with diabetes, you have cancer, you had an injury that requires lengthy rehabilitation, tough luck, you’re going to end up in that pool of unhealthy people,” Cohn said.

Insurance is no cure-all, to be sure. It won’t take away my cousin’s cancer or fix Bill Clinton’s heart. That would require research and better medicines.

Depriving insurance, or care, to those who need it most is inconceivable to a society as ours was intended. It’s uncivil.

*as heard on The Brian Lehrer Show 2/16/10: Rates on the Rise

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Henrietta’s Cells Speak

“One of the ways that I gained the trust of the family is that I gave them information.”

(R. Skloot, a journalist, speaking about her interactions with Henrietta Lacks’ family, Columbia University, Feb 2, 2010)

This week I had the opportunity to hear a terrific talk by Rebecca Skloot, author of a new, flying-off-the-shelves book –The Immortal Life of Henrietta Lacks.

Mrs. Henrietta Lacks died of metastatic cervical cancer in the colored ward at Johns Hopkins Hospital in Baltimore, MD in September 1951. She lived no more than 31 years and left behind a husband, five children and an infinite supply of self-replicating cancer cells for research scientists to study in years to come.

HeLa cells with fluorescent nuclear stain (Wikimedia Commons)

Like many doctors, I first encountered HeLa cells in a research laboratory. Investigators use these famous cells to study how cancer cells grow, divide and respond to treatments. I learned about Mrs. Lacks, patient and mother, just the other day.

Skloot chronicles her short life in fascinating detail. She contrasts the long-lasting fate and productivity of her cells with that of the woman who bore them. She connects those, and her human descendants’ unfortunate financial disposition, to current controversies in bioethics.

In the years following their mother’s death, scientists repeatedly approached her husband and asked her young children for blood samples to check the genetic material, to see if their DNA matched that of cell batches, or clones, growing in research labs.

The issue is this: her husband had but a third-grade education. The children didn’t know what is a “cell,” “HLA-testing” or “clone.”

The family had essentially no idea what the doctors who’d taken, manipulated and cloned their mothers’ cells were talking about, Skloot recounts. They thought the doctors were testing them for cancer.

Years later, when they learned that their mother’s cells were bought, sold and used at research institutions throughout the world, they became angry and distrustful. The problem was essentially one of poor communication, she considered.

“Even a basic education in science would have helped,” Skloot said. “Patients, they want to be asked, and they want to be told what’s going on.”

Well said!

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How to Avoid Death in the ICU

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:

MedlinePlus on Advanced Directives;

New York State: information on Health Care Proxy forms and DNR orders

Family Caregiver Alliance on End-of-Life Choices

Hastings Center on End of Life Issues

American Hospice Foundation

Cisely Saunders Foundation

Hospice Foundation of America

The National Hospice and Palliative Care Organization

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How Well Do You Really Want to Know the “Red Devil?”

I know what it’s like to get the “red devil” in the veins.

You can learn about Adriamycin, a name brand chemotherapy, on WebMD. Or, if you prefer, you can check on doxorubicin, the generic term, using MedlinePlus, a comprehensive and relatively reliable public venture put forth by the National Library of Medicine and National Institutes of Health. If you’re into organic chemistry, you might want to review the structure of 14-hydroxydaunomycin, an antibiotic and cancer therapy first described 40 years ago in the journal Biotechnology and Bioengineering.

from the National Center for Biotechnology Information (NCBI) database, http://pubchem.ncbi.nlm.nih.gov, accessed 12/11/09.

from the National Center for Biotechnology Information (NCBI) database, http://pubchem.ncbi.nlm.nih.gov, accessed 12/11/09.

When I was a medical student, I studied some facts about doxorubicin hydrochloride, enough at least to answer a few questions during pharmacology exams. Later, as a resident in internal medicine, I knew the drug to be an anthracycline, a chemotherapy that intercalates into DNA, wreaking havoc in cells’ genetic material and reducing the replication potential.

As an oncology fellow, I prescribed and administered the clear, intense red fluid to patients with lymphoma and breast cancer. I learned to be careful: if the medicine slips from the intravenous catheter and enters the nearby, tender tissue below the skin, it can harm. The drug commonly causes hair loss and stomatitis; mouth sores can be so painful it hurts to eat, even when the nausea doesn’t squelch your hunger, or talk. Adriamycin affects the bone marrow, where blood cells are produced, and heart.

It’s not an easy drug; my patients knew this and so did I.

This month marks seven years since my first dose of Adriamycin, part of the “A/C” regimen that’s sometimes given to breast cancer patients. Was it worth going bald, getting anemia, sluggishness, mouth sores, chemo brain and all else that I experienced? Yes; I have no doubts. But I was lucky; my tumor was small and I needed only a few cycles.

I never knew Adriamycin as the red devil until a few years ago when a friend’s stepmother, undergoing treatment, used the term in an email.  She’s a woman who read lots of blogs and shared her experiences with other breast cancer patients online. I realized that despite working in an academic medical center and regularly communicating with physician-friends and oncologists at meetings, I still had a few things to learn.

Now that I’m writing about cancer, I wonder what sorts of information people really want or need to make informed decisions. I suppose some would like to know the chemical structure of doxorubicin before receiving such a potentially poisonous, possibly life-saving drug. Maybe a patient’s husband, or daughter, would seek details about the half-life, metabolism in the liver, side effects and more.

When I received my chemotherapy, I didn’t want to read about breast cancer or treatments. Rather, I chose an oncologist I trusted and liked. Then, for the most part, I followed her advice. But this sort of strategy’s not for everyone, particularly for patients who don’t know their doctors as I knew mine. Besides, most cancer patients aren’t already board-certified oncologists.

With so much available data at our fingertips, some patients will amass many resources about their condition. Others will be more passive, mainly listening to their physicians or perhaps, to friends and family members who do the research on their behalf. To a large extent, it’s a matter of personality –

Ultimately, you can’t know everything about Adriamycin until you’ve had it in your veins. Whether being familiar with the chemical structure makes a difference, is less certain.

What’s clear is this: with so much information at our disposal, there’s an opportunity for patients to help doctors make better decisions.

(all links accessed 12/11/09)

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