Making Time When Time Is Short, and Other Insights From a New End-of-Life-Care Nurse

This is National Nurses Week, and a perfect moment to highlight the special training, ability and insights that distinguish hospice nurses in truly remarkable ways.
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This is National Nurses Week, and a perfect moment to highlight the special training, ability and insights that distinguish hospice nurses in truly remarkable ways.

Ann Anderson had been training as an end-of-life-care nurse for only a short time when she was asked the "million dollar question" (as her mentor calls it) by a family member: "How long does my loved one have?"

Thanks to her hands-on training with veteran hospice nurse Alexandra Charles during home visits, Ann was able to provide comfort and insight to the family member -- even though Ann, as none of us could have, had no definite answer. "No one can say for sure," she recounts telling the family. "What I can say is that he's not in pain right now, and to expect good days and bad days." She promised to let the loved ones know when she saw transitions in the stages of dying, so they could prepare.

As her training mentor, Alex looks back on this as one of Ann's "aha moments."

"She had been copying my script before that," Alex recalls. "When I heard her presenting on her own, I thought, girl, you've got it." That is, the uncanny ability to relate sensitively and compassionately to people of all ages, cultures and walks of life -- which hospice nurses must have in addition to their deep clinical knowledge of what happens to the body at the end of life. "It's not necessarily what you say," explains Alex. "It's how you say it."

This uncommon ability, innate in many who work in end-of-life care, is also nurtured and honed through hands-on training. At my organization, the Visiting Nurse Service of New York, clinical nurses who want to become certified in end-of-life care spend three weeks shadowing a nurse making hospice visits to the home, as well as undergoing other orientation and training requirements.

A Growing Demand

In addition to improving quality of life at the end of life, palliative care can also help patients live longer, studies show. As people grow more familiar with its benefits and as Americans increasingly want to have input on their end-of-life care, use of hospice services and palliative care is expanding. In 2011, an estimated 1.65 million patients received services from hospice, up from 100,000 in 1984. In addition, the number of U.S. hospitals with a palliative care team increased more than 148 percent between 2000 and 2012, according to the NIH.

Until recently, there was little attention to end-of-life and palliative care in typical nursing school curricula. Ann, who graduated from nursing school in 2006, happened to have a teacher who was a proponent of hospice and described its benefits to her students. As for Alex, who graduated in 2005, "If it was talked about in nursing school, I must have missed that day." I am hopeful that as more health professionals and patients understand the importance of palliative care at end of life, this area of expertise will continue to get more attention in the training of nurses and other health professionals. It certainly seems to be on the rise in medical education.

Spending time with the dying is absent from general nurse training in part because there are not enough clinical settings to provide the experience, the New York Times reports. The End-of-Life Nursing Education Consortium (ELNEC), which has trained more than 15,000 nurses and nursing instructors in palliative care, cites another reason: "People in our country deny death, believing that medical science can cure any patient. Death is often seen as a failure of the health care system rather than a natural aspect of life. This belief affects all health professionals, including nurses."

In one remarkable antidote, a retired Massachusetts nurse in the final stages of pancreatic cancer invited nursing students into her home to learn firsthand about how to care for the dying. Profiled recently in the New York Times, Martha Keochareon gave nursing students indelible lessons about the disease processes of end-stage cancer, pain and symptom management, active listening at the bedside, and life in general. She passed along, for instance, hard-won advice on marriage: "Don't yell at each other unless the house is on fire." She also taught them invaluable lessons about nursing: "Just dig a little deeper -- you know?"

Trading Emergency Care for Quality-of-Life Care

Having the liberty -- and the time -- to dig deeper was, in fact, what prompted both Ann and Alex to switch to end-of-life and palliative care after years spent in other areas of nursing. They were each working in a hospital setting with extremely ill patients, Alex in an intensive care unit in Florida and Ann in a New York hospital's telemetry unit, where patients with complex medical needs receive constant monitoring. While many of their patients were in final days or weeks, much of that valuable time was spent on invasive procedures that, in the end, did not prolong life and certainly reduced quality of life.

"It took a while to train myself to get away from hospital ICU state of mind where I wanted to jump onto someone's chest the minute I walked into the room," says Alex, who became a hospice nurse five years ago. "You have to change your mindset for hospice. If you walk in with an ICU state of mind, to do every blood draw and lab test, you're doing more harm than good -- not to mention causing great anxiety for the family."

Ann remembers caring for a patient on the telemetry unit who was in the final stages of metastatic lung cancer, on oxygen, with a cardiac monitor. "We got constant orders from doctors to draw blood, get this test and that test, send her here and there for procedures," Ann recounts. When doctors finally discussed hospice services with the patient's son, time had almost run out. "We stopped the daily blood draws, but she died in the hospital instead of at home," says Ann. "It was so sad."

By contrast, Ann describes one of the first patients she saw as an end-of-life-care nurse, a woman who was newly diagnosed with pancreatic cancer and who had just lost her home in Hurricane Sandy. Ann spent hours talking with the patient and her husband of 50 years, learning about their strong Catholic faith and sharing her own experiences having a brother who is a Catholic priest. "After the visit, the husband pulled me aside and said, 'Having you here has brought such life to her,'" Ann says. When she next spoke with the family, she learned that the wife's spirits had improved so much that after weeks with no appetite she finally had a craving -- for a McDonald's Big Mac -- which her family was glad to indulge.

"The biggest difference is the amount of time you can spend with the patient," says Ann, who became a full-time hospice nurse in September. "I can learn about someone, their fears, their concerns. I can take time to explain things. That's something I didn't get when I was constantly taking lab draws and running around. This is the field of nursing where I feel I've made the biggest difference in people's lives."

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