By ELAINE SCHATTNER, MD

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

Elaine Schattner MD is an  trained oncol­ogist, edu­cator and jour­nalist who writes about med­icine. She teaches at Weill Cornell Medical College.  You’ll find her blog, where this post first appeared, at Medical Lessons.