Doing Better: Efforts underway to improve end-of-life care in NC

“Our lives are stories, and the ending of those stories matters,” Dr. Atul Gawande, a surgeon, Harvard Medical School professor and best-selling author, observed during a sold-out lecture in Greensboro last month.

But right now, he says, too many of those stories are ending badly – right here in North Carolina and everywhere else in our country.

For all of our nation’s advances in technology and medicine, we remain flummoxed by what Gawande calls “the big unfixables.” They are the chronic diseases, frailty and other infirmities that inevitably accompany aging. Whether it’s the medical establishment or our own families, we frequently don’t plan well for physical and mental decline or gracefully accept their arrival.

The upshot: Terminally ill individuals often endure brutal treatment regimens that rarely enhance their lives. Institutionalized nursing homes disregard their residents’ individuality. And families worry about aging relatives but don’t know where to turn for information or help.

With his most recent book “Being Mortal: Medicine and What Matters in the End,” Gawande has helped launch a long-overdue national conversation on what he describes as our failed, 50-year experiment in medicalizing mortality. An excellent storyteller who delivered last year’s commencement address at UNC-Chapel Hill, Gawande contends that medicine, rather than futilely trying to resist mortality, can do a great deal more to improve the quality of life for the sick and aging.

“Being Mortal” explores the gradual emergence of innovative retirement communities and nursing homes, the powerful impact of hospice programs, and the art of training doctors to lead sensitive conversations with patients and families about end-of-life care. The book sounds a hopeful note for the future, and some initiatives under way in North Carolina signal that we are ready to help lead the revolution championed by Gawande.

Reinventing care

There’s little time to waste. As we explored in a recent column, the population of older adults is rising dramatically in the Carolinas. According to U.S. census numbers, people over the age of 65 grew 28 percent between 2000 and 2010 – almost three times the national average.

Duke University’s Center for the Study of Aging and Human Development is among the organizations providing them valuable support. Established in 1955, the center is investigating mobility issues related to growing older and behavior and physiology changes associated with aging. The goal: translating research into practical health care approaches. The Duke Aging Center Family Support Program, the Bryan Alzheimer's Disease Research Center at Duke and Alzheimer’s North Carolina jointly offer free services for all North Carolina residents. They include confidential, personalized tips and coping strategies for caring for people with memory disorders, as well as phone assistance for identifying care options, support groups, and education programs.

Midway across the state in High Point, the Pennybyrn at Maryfield retirement community is on a mission to reinvent long-term care. Run by an order of Catholic nuns based in England, the nonprofit community has taken a pioneering approach to caring for residents with severe memory loss and debilitating physical conditions. Pennybyrn’s long-term care facility is divided into a series of “health care households” – dedicated wings that have their own front porches, short hallways of private rooms and cheerful community living rooms, eating areas and outdoor courtyards. At the center of the building is a “town square” where residents of all the households gather for community events. The facility’s model of making life in long-term care feel more like home has attracted visitors from around the country who are interested in replicating the concept.

Living longer

Some North Carolina residents will also benefit from a new, national Medicare pilot program that permits enrollees with advanced illnesses to receive both palliative and curative care. Currently, Medicare patients who sign up for hospice are only allowed treatments that minimize suffering. Someone with advanced cancer, for instance, cannot be in hospice and also have Medicare cover radiation treatments that might actually reduce pain. As a result, many patients delay hospice care for as long as possible, often increasing the need for expensive and traumatic emergency care near the end of their lives.

In North Carolina, patients in eight regions will have an option in the near future to receive both palliative and curative care, including Cabarrus County, the Catawba Valley, Iredell County and Wake County. Studies have shown that patients benefiting from both kinds of care often live longer than those receiving only curative care.

It’s a finding that wouldn’t surprise Gawande – and a yet another indicator that making peace with mortality is sometimes better than fighting it.

Christopher Gergen is CEO of Forward Impact, a fellow in Innovation and Entrepreneurship at Duke University, and author of “Life Entrepreneurs: Ordinary People Creating Extraordinary Lives.” Stephen Martin, a director at the nonprofit Center for Creative Leadership, blogs at They can be reached at and followed on Twitter through @cgergen.