Sjany de Groot, RN, has what many would consider the saddest job in the world: caring for critically ill children, many of whom die within a few months of their arrival at her San Luis Obispo, Calif., home-turned-nursing facility.

In order to cope with the emotional stress of treating comatose, hydrocephalic and other children with terminal diseases (who range in age from 2 to 14), the 73-year-old Dutchwoman and her small team at de Groot Nursing Home for Children have devised some strict policies.

"We don’t go to funerals," said de Groot, who has watched more than 80 children die in her 26-year home practice. "When they go, that’s the end, we just say goodbye.

"We once had a 4-year-old girl here die of AIDS. Her attending nurse was really hurt by the death. So she wrote down her feelings in a letter, and that helped her to express her grief. These children we care for, you can wonder: Why were they born? We don’t know. But they’ve come to Earth and we’ve chosen to help make life livable for them while they’re here. Yes, it is sometimes depressing, but you also feel like you’ve done some good. That’s a blessing."

Although public awareness about end-of-life care issues has grown during the last two decades, the stress factors on nurses who work with the dying only recently have received widespread attention—but rarely in nursing schools.

This year’s Textbook of Palliative Nursing notes that hospices serve 23 percent of dying Americans (50 percent of terminal cancer patients). A 1997 International Council of Nurses mandate acknowledged the unique and primary role of nurses for ensuring that individuals at the end of life receive a peaceful, dignified death. But, most nursing programs still consider end-of-life care an afterthought, and offer little counsel on how to deal with the grief and anxiety stirred by seeing patients die on a regular basis, said Rose Virani, MHA, RN, a research specialist at City of Hope National Medical Center in Los Angeles.

Together with the American Association of Colleges of Nursing and funded by the Robert Wood Johnson Foundation, City of Hope embarked last year on the End-of-Life Nursing Education Consortium project, a 3½-year program to create a wide-ranging curriculum for effective, end-of-life care.

Its nine modules, drafted by investigators and experts throughout the country, address issues that include symptom management, preparation and care for the time of death and grief/bereavement. The acknowledgement of the caregiver’s own emotional struggles vis-à-vis the patient has received too little attention in the past, said Kathy Egan, MA, RN, certified hospice and palliative nurse and vice president of the Hospice Institute of the Florida Suncoast in Largo, who co-drafted the bereavement module.

"In order to care for people, you have to experience the loss yourself, create and maintain your own balance, find meaning and purpose in all experiences, even loss," Egan said.

The answer lies in the degree of involvement in the patient’s family dynamics at a critically vulnerable time, said Ashby Watson, RN, a psychosocial oncology clinical nurse specialist at the Medical College of Virginia Hospitals at Virginia Commonwealth University in Richmond, whose specialists also contributed to the End-of-Life Nursing Education Consortium curriculum.

"That’s the $64,000 question: How do you maintain enough distance and still provide a caring environment for the patient and family? Many nurses can get attached to a family, and boundary issues come up. You’re walking a fine line. If you get over-involved, it can be a double-edged sword. At the same time, it’s stressful but also rewarding. You’re helping a family make a transition from life to death."

Nurses can easily find themselves overwhelmed by the technical and emotional demands of the job, and by the reality that no two deaths are identical, said Rachel Brommer, RN, director of patient services at Omega Hospice in Brownsville, Texas.

"Each house you come to is in crisis: ‘Daddy’s dying,’ and you have to show them how to handle the tubes and oxygen if the patient needs it, so on top of patient care, you teach the family to be nurses at home," Brommer said. "A lot of them are afraid of the dying process; they may not know that a kind of cough or a noise from a machine is normal at this time. So you try to prepare them, keep the patient comfortable, the symptoms under control. It’s aggressive comfort treatment and pain management in a home setting; no one wants to go back to the hospital.

"The families tend to say, ‘Do what it takes.’ They want to see the ventilators, the life support machines, all the bells and whistles; otherwise they think we’re doing nothing, that we’re just letting them die. But all of that can be hard on the patients. We have to stick up for them. With a DNR order and the patient’s wishes spelled out, we can tell the family, ‘No, listen to what your loved one is saying.’ "

Like people everywhere, the nurses at Omega Hospice have come up with their own ways of dealing with the constant death they face: group prayers, daily meals together, bereavement counseling and looking out for each other, Brommer said.

"A few weeks ago a young lady, 36, passed away from breast cancer, and her caregiver was a close friend. I knew it was a hard strain on her, so we let her have two days off with pay to decompress. That’s the value of a flex schedule: The nurses feel more in control of their time."

In fact, many of the same stressors that affect nurses in other fields are at work in the end-of-life sector, and similar measures can relieve them, said Judy Lentz, MSN, RN, executive director of the Hospice and Palliative Nurses Association.

"Depression is not an issue for nurses in cancer care, although the public tends to believe it is. Really, the stress comes more from the working conditions than from patients dying."

A patient’s sudden or unexpected death, or the death of a child, however, can lead to added emotional stress, Lentz said, and for such cases a nurse should have access to peer support and counseling.

But any effective end-of-life caregiver needs to look deep within and get in touch with feelings not often discussed in death-denying American culture, said Kim Mooney, bereavement counselor at Hospice of Boulder County in Lafayette, Colo.

"They have to be aware of grief, bereavement, their own feelings about mortality. That has to be articulated, instead of getting slammed with it when they start seeing patients. When a nurse walks into a hospice environment, there’s a huge paradigm shift.

"From an attitude of having to cure the patient, they have to adjust to a place where 100 percent of patients die, where success is measured differently. Also, they’re going from a position of subservience to doctors to a place of real empowerment, where they are the primary caregivers. Some aren’t used to it."

Along with the mainstreaming and corporatization of hospice care, Mooney said, come smaller windows of opportunity to establish the vital rapport between patient, family and caregiver. With patients coming to hospice later in the dying process, nurses must do more crisis management and trauma intervention, with less time to stabilize the patient’s pain and comfort. A process that ideally should take about six months is increasingly concentrated in an intense few weeks, or even less.

This makes peer support even more important, Egan said. At the Hospice Institute of the Florida Suncoast, this has evolved into closure visits with families, memorial activities and other rituals that go beyond merely the physical, but embody psychosocial and spiritual concerns commonly invoked by the human encounter with death.

"It’s a matter of recognizing loss, acknowledging loss, reconstructing those relationships, working in a supportive team environment," Egan said. The staff here talks about the people who died; we process the grief. We ask how the family’s doing, even long after the death.

"We ask the question: What did this experience do for me? What lessons did the dying person give back to us, what can we use to better care for the next patient? That’s how you invest the experience—with meaning and purpose—so you end up with gain, not just loss."