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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Why Medical Lessons?

One of the things I liked best about practicing medicine is that I was constantly learning.

Making rounds at seven in the morning on an oncology floor would be a chore if you didn’t get to examine and think and figure out what’s happening to a man with leukemia whose platelets are dangerously low, or whose lymphoma is responding to treatment but can’t take anymore medicine because of an intense, burn-like rash. You’d have to look stuff up, sort among clues and discuss the case with the team and other physicians.

And then you’d get to talk to the patients and their families. In the teaching hospital where I worked as a clinical oncologist, you’d encounter a mix of folks from my east side neighborhood, Russian and Chinese and Spanish-speaking immigrants with homes in all parts of New York City, and a spectrum of visitors from countries like Cambodia, Pakistan and Ecuador. Each case offered a window into another family’s values and concerns.

Being a patient is an entirely different sort of experience except that, like being a doctor, it involves learning about medicine, problem-solving and meeting all kinds of individuals.

As a child with scoliosis – a curved spine – I discovered early that some therapies don’t work as you might hope or expect. I wore a back brace for 4 years, 23 hours each day, and it didn’t do the job. Then, my parents took me to consult with most of a dozen male orthopedists. Their crassness, frankness and sometimes kindness impressed me. I realized that like any other humans – whether they’re dictators or shopkeepers – doctors vary in their personalities.

Today I recall one young doctor who helped me, a resident at the Hospital for Joint Diseases. He came by my room early in the evening of December 31, 1974 because I needed a new intravenous (IV) catheter. By then I’d been in the hospital for weeks after spine surgery; there was hardly a vein left for heparin, a blood-thinner. It turned out the resident came from a town on Long Island not far from where I lived. He spoke openly, about his experiences in high school, as he calmly and patiently patted down my arms and hands and legs and feet until he found a spot for the IV. He got the line in, and I got my medication.

Just before midnight, Dick Clark was on TV for a “New Year’s Rockin’ Eve.” The resident, whose name I don’t recall, came by to see how I was doing. He stayed for perhaps 15 minutes, for what seemed like no reason other than to keep me company. We counted the seconds and watched the ball drop on a small black-and-white TV suspended by a hinged-metal arm over my hospital bed.

He was compassionate, and that made me feel better. What a difference he, one essentially unnamable young physician, made in my experience of that New Year’s eve in the hospital, and in my life and work.

Today, December 31, I think of him as I navigate my path as a patient and as a doctor. I’m still learning about medicine, every day in each new year.

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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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Doctors Don’t Tweet

I didn’t know much about social media until the summer of 2008. Then, I entered Columbia University’s Graduate School of Journalism as a new student and attended an optional lunch-time session on Facebook, Gmail and Twitter.

My kids used Facebook, so I knew about that. Still, I hesitated to sign on to something so un-private, so revealing, so exposed. I asked the dean of students if joining Facebook was essential to my participation in the graduate program.

“Not exactly,” he said. “But if you want to be a journalist, you probably should.”

So I did. Over the course of 10 tough academically dense months, I saw streams of status updates, invitations to parties, news flashes and pix. Finding Facebook friends is easy, I learned, if you’re spending your days amongst people half my age.

Still, I wasn’t entirely comfortable. Physicians are professionals, reserved and careful.

Gradually a few of the moms I know from my kids’ school connected. Some of them are using Facebook for professional purposes, others maybe to assuage boredom. Some, I suspect, joined to monitor their teenagers’ lives. (I didn’t.) More recently, a bunch of my high school classmates reunited on-line. A few friends from college met up there, too.

But my physician friends – some 25 years’ worth since I entered med school – aren’t in sight.

The New England Journal of Medicine first approached this somewhat sensitive subject last summer in an article “Practicing Medicine in the Age of Facebook.”

I wonder when the Journal will talk on Twitter.

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Dinner with my Family

I come from a family of doctors. My dad is a retired physician. He’s a son of immigrants who attended med school on a scholarship. For decades he practiced internal medicine together with his younger brother, my closest uncle.  They cared for countless adults, gradually absorbing their patients’ spouses and siblings, children and grandchildren into their burgeoning practice.

Our dinners at home were punctuated by calls from the answering service about all sorts of emergencies. Every night at the end of the meal, my father would sit at the table sipping tea, returning patients’ calls to discuss their test results and concerns. Sitting in the next room, doing my homework, I heard about tumors, pain, headaches, heartburn and heart attacks. I learned about symptoms, blood tests and the concept of a differential diagnosis. You name it, pretty much any illness, and I might have answered a few questions. It was a bit like watching “House,” but on-stage, in my home.

Family gatherings centered on two things – food, and talk about medicine. We spoke of interesting cases (always nameless), challenging conditions and, even back then, the constraints of health care costs. My fiancé, now husband of over 20 years, couldn’t get over how debate over health care dominated our Rosh Hashanah and Thanksgiving feasts.

Now I’m getting to my point –

I grew up learning about medicine, and I understood the terms early on.  I’d been a patient, too, in and out of orthopedists’ offices and disfiguring braces in my adolescence, and then in the hospital with inexplicable fevers, blood clots and more.  All that, before becoming a physician, doing research and taking care of people facing the most serious of illnesses.

As a patient, I entered the doctor’s office armed with information. Seven years ago, when I learned I had breast cancer, I knew exactly what to do. The decisions, though difficult, were almost straightforward, buttressed by my knowledge and familiarity with the language of medicine.

Tomorrow, over dinner, I don’t want to talk about mammograms.  Or health care reform, or even the swine flu. But I do want to learn and exchange ideas.

People – patients and doctors both  – need to speak a common language. Just as at the dinner table, the conversation moves forward only if we keep our minds open, listen carefully and communicate with mutual respect.

Stay tuned!

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