NurseWeek: Death and Dying: Nurses recognize need for better training to deal with end-of-life issues

Death and dying
Nurses recognize need for better training to deal with end-of-life issues

By José Alaniz
October 2, 2000
Photo: Eyewire

As baby boomers age, they will direct more of society's attention to the issues of death and dying and terminal care, but a recent study found that more than half of surveyed nurses considered their end-of-life training inadequate.


	You've read the article. Now tell us what you think. Related sites End-of-life Nursing Education Consortium American Association of Colleges of Nursing End-of-life Resources On their own terms Nurses come to grips with life’s end Discussions on end-of-life care often revolve around a set of key issues, such as pain management and palliative care, patient autonomy in decision making, and family involvement. But the caregivers themselves, who deal with dying patients daily, don’t always get the attention they deserve. Bill Dodson, RN, an emergency room nurse at Johns Community Hospital in Taylor, said, "I use a lot of humor; I mean, we’ve got to." Sometimes humor with the patient works but not always, so he often cracks a couple of jokes with X-ray technicians to relieve tension. But, he said, you obviously cannot use humor with the families. "They’re freaked out, and they want something done to intervene." "Nurses have to grieve, nurses are human beings," said Edwina Taylor, RN, head nurse of the Balm of Gilead terminal ward at Cooper Green Hospital in Birmingham, Ala., which treats indigent patients. "It’s not good to disengage, to be distant. The worst thing you can do is to act like you’re not affected, to let it pile up. We hold bereavement sessions for nurses, to help them mourn each patient as he or she dies. It’s a loss for the nurses, too." At Johns Community Hospital, however, Dodson said nurses do not have time to decompress. "There is really no time in an emergency room at a small hospital to do that," he said. Taylor, featured recently on the PBS series "On Our Own Terms: Moyers on Dying," said the psychological/spiritual work nurses need to do in caring for the dying involves looking inward. "We as caregivers have to come to terms with our own mortality. It can be difficult for a young nurse to care for a 25-year-old patient who’s terminally ill, whose circumstances are similar to hers. You start thinking, ‘That could be me.’ Here we try to celebrate living and comfort the dying. We celebrate the moment." While not officially part of the End-of-Life Nursing Education Consortium Project platform, humor also plays a vital role in Taylor’s care for the terminally ill in her ward. She does her rounds wearing "funny socks," a utility belt, a "giggle man" doll and buttons that say, "I was born at night, but not last night." "We all need a belly laugh every day. I was patching before Patch Adams was. It helps to keep balanced, to keep our morale up," she said.

‘We arrive at a general view of the nurse as a person who must cope with the daily challenges and demands of the death situation – yet lacking the authoritative leverage of the physician, lacking relevant training from her own profession, and lacking an on-the-job atmosphere that would support her in times of personal distress."

For many, the words of psychologists Robert Kastenbaum and Ruth Aisenberg, written more than half a century ago in their book The Psychology of Death, still ring partially true.

"We’ve come a long way, but we still have much further to go in providing education on the psychology of death and dying and how to handle that," said Beth Mancini, MSN, RN, FAAN, senior vice president of nursing administration at Parkland Health & Hospital System in Dallas.

A 1999 report by the National Task Force on End-of-Life Care in Managed Care recommended that the health care system take steps to enhance palliative pain management care, knowledge and skills of medical and nursing leadership, and a recent study by the Los Angeles-based City of Hope National Medical Center, a designated comprehensive cancer center, found that more than half of 2,300 surveyed nurses consider their end-of-life training inadequate.

As if to confirm this, City of Hope last year examined more than 50 nursing school textbooks and found that only 2 percent of the content related to end-of-life care.

Nursing school curricula do not integrate end-of-life training consistently, said Rose Virani, MHA, RN, an oncology certified nurse and research specialist at City of Hope. "They’ll have this training scattered all over the place, rather than include it systematically. It’s understandable. Nursing schools feel there’s no time to cover this material along with everything else the students have to take in, and it’s not in the textbooks, not on the national state board exam – so it’s a vicious circle," Virani said.

Medicine’s long-standing focus on "fixing the problem" rather than comforting the patient accounts for the blind spot, although that doesn’t stop nurses from regularly encountering death on the job-and having to deal with it somehow, said Patrick Coyne, MSN, RN, a certified hospice palliative nurse and clinical nurse specialist at the Medical College of Virginia Hospitals at Virginia Commonwealth University.

Nurses are in a unique position to deal with the patient after the physician has delivered a diagnosis, Mancini said. "Often the physician will ask the patient, ‘Any questions?’ The patient will say no, but after the physician has left, the nurse provides additional information and comforts the patient as he or she processes the information."

In addition, Mancini said, we as a society have not come to understand death and dying in great depth. Nurses need to learn more about the sociology and psychology of family members receiving and processing information about death.

"We have come a long way in recognizing nurses’ unique role, but there’s still much that can be done to teach them specific strategies for dealing with end-of-life options," she said.

As baby boomers age, they will direct a large chunk of society’s attention back to the issues of death and dying and terminal care. "This population now has to deal with caring for elderly parents and examine its own feelings of mortality," Coyne said.

Sharon Valente, RN, an assistant professor of nursing at the University of Southern California who has done extensive research in suicide and euthanasia (and who received a nursing excellence award from NurseWeek in 2000), said the health system needs standards for assessing and evaluating terminal patients, managing pain and depression, discussing options to medical intervention, and maintaining models of care that recognize cultural differences.

"We still have a ‘one model fits all’ mentality," Valente said. "But we need to consider the example of, say, a Korean grandmother who doesn’t want all the decision-making power in her end-of-life care, but would rather share it with her family. Not everyone wants an individual-based approach, which is what we often use," she said.

Valente also emphasized that the resentment nurses sometimes feel about the demands of terminal patients is often an expression of larger problems and insufficiencies built into the health care system, as well as symptoms of an inability to deal with the emotional needs of the dying.

The End-of-Life Nursing Education Consortium Project, a partnership between City of Hope and the American Association of Colleges of Nursing, and funded by the Robert Wood Johnson Foundation, addresses many of these concerns.

The consortium is developing curricula to improve end-of-life nursing care and will have its first workshop for nursing school instructors in January in Pasadena, Calif. The workshop will cover palliative care and pain management, ethical and legal issues, cultural considerations and how nurses and family members can better understand grief and bereavement processes.

For most people, death remains a monolithically serious business, although not necessarily depressing.

A recent Duke University study of 75 patients highlighted aspects of what they considered a good death: management of pain and symptoms and affirmation of the whole person. To achieve that, the dialogue between patient, nurse, doctor and family needs to continue, many of the sources for this story said.

"It’s becoming more of an issue, and it should be," Verani said.

"It’s reality. Everybody dies."

As Ira Byrok, MD, succinctly noted in his book, Dying Well: Peace and Possibilities at the End of Life:

"Suffering among the dying in America is pervasive, and so much of it is unnecessary."