THE BLOG
05/02/2016 09:17 am ET Updated May 03, 2017

Defying a Death-Defying Culture

My brother-in-law is living with stage IV pancreatic cancer--what others call dying of cancer. And if the process is equal parts hope and agony, it's also wholly, profoundly American.

He's in pain. He's besieged by tests, scans and appointments, and is in and out of the ICU. His gastrointestinal tract has been poked, prodded and repeatedly coated with x-rayable drink. Even after surgery, his pancreas and neighboring organs remain spotted with tumors. Yet he seeks aggressive treatment, second opinions and hope, just as many of us -- when faced the choice of three months to live with no chemo, or a year or more with -- would.

Even under the promising glow of medical technology, we're faced with a new challenge: How we should die, and how those around us -- nurses and physicians among them -- can and should help.

In America, our fugue from mortality -- avoiding its contemplation in wellness, and attempts to out-maneuver it with treatment and technology in illness -- is culturally singular. Most Americans say they don't want feeding tubes, or ventilators, or to go to the ends of the earth to survive what's unsurvivable. We don't want to feel pain, or have our watching families suffer. But when illness invades, and well-intentioned clinicians toss slivers of hope and chance into the air, many of us -- most, perhaps -- leap, ever-American in our belief in the technological imperative.

Palliative care clinicians and professors like us know there is a better way. And in light of the Institute of Medicine's recommendations clarion call for better and more coordinated palliative care instruction in nursing and medical school, now is the time for nursing leaders to formalize how we teach palliative care so that people like my brother-in-law can live better with their disease in the time they have left.

Between the IOM's `97 report Approaching Death and its decade-later follow-up, Dying in America, hospice and palliative care are now board-certified specialties, and thankfully so. Associations and governing bodies legitimize it, research on it is more robust, and undergraduate nursing students today emerge with an understanding of its basics because of a standardized curriculum endorsed by the American Association of Colleges of Nursing and the Hospice and Palliative Nurses Association. Conversations between patients and their providers about their hopes and expectations for treatment -- perhaps the most important conversation they'll ever have together -- are now reimbursable, thanks to the Centers for Medicare and Medicaid Services' move last January.

But to truly help people live better with serious or chronic illnesses, we must carefully define teaching standards for advanced practice nurses and beyond. Consistency of palliative care knowledge, its best practices and opportunities for clinicians' professional development are key to ensuring that our field's best players come to bat for our most vulnerable patients.

At the graduate level, palliative care is taught spottily, at best. Though end-of-life content has been mandatory for American medical schools since 2000, a recent study found that most medical students spend just 17 hours focused on palliative care, pain management and end-of-life topics, a tiny fraction of the thousands of hours of learning that takes place over a four-year curriculum -- and certainly dramatically less than what's needed. Our country's graduate nursing programs are similarly inconsistent in their approach, despite a crushing need for palliative care specialists and an anticipated 18,000 provider shortfall. US nursing schools must not only create more palliative care programs and tracks, they must agree to standardize how palliative care is taught.

There is hunger from nursing students and experienced clinicians for information about palliative care, and it's imperative that academics, researchers, professional associations and clinical colleagues come together to define what advanced practice nurses should be taught and how to implement the core competencies developed by Hospice and Palliative Care Nurses Association. Our point is not that we have it figured out, but to insist that discussions begin and consensus be sought.

Palliative care, while a specialty, lies at the heart of what every health care provider does -- whether nurse, physician, social worker, chaplain or psychologist -- because no matter the dazzle of technologies that extends life, our core focus can and should remain: Cure sometimes, relieve often, comfort always. Let every provider who strides into every hospital room embrace that pledge. Let our education system help them get there.

Clareen Wiencek, president-elect of the American Association of Critical Care Nurses and a long-time certified palliative care nurse practitioner and professor, directs the Acute Care Nurse Practitioner programs at UVA School of Nursing where her colleague, Dorrie K. Fontaine, is dean and professor.