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Besides managing physical pain and treating symptoms, teams may initiate family conferences, offer grievance counseling, make referrals to help with finances, and help patients and families make arrangements for future care, such as advance directives. Many send cards and hold memorials after a patient dies.

Full-service care

A few hospitals have suites set aside for dying patients and their friends and families. The University of California, San Francisco Medical Center, considered a national model for palliative care, has two large comfort care suites on a 34-bed med/surg unit.

The suites, modeled on those in birthing units, have parquet floors and large windows with views of the city. A wooden cabinet holds a television and VCR, and brass lamps stand on bedside tables. The beds are covered with homey blankets and a loveseat pulls out into a sofa bed for family members.

Medical equipment is hidden behind paneling and a glass cabinet holds religious icons, including a Bible, a Quran, and a Torah.

Other cabinets contain books on death and dying. The hospital’s Child Life Services program offers counseling, books, and support for children of dying patients.

Palliative care teams in hospitals without comfort care rooms often arrange for special services, including art therapy, pet therapy, and aromatherapy. Many contract with musicians, such as harpists or flutists who play therapeutic music if patients and their families desire it. Nurses at OHSU Hospital help family members make handprints and memory boxes of their loved ones.

“It’s beautiful to watch what happens in the room when the nurses and the family are working together,” Smith said. “It really creates a bond and the nurses feel they are able to do something significant and healing with the family.”

The most important aspect of palliative care, nurses say, is helping patients and families realize what they want their care to be. Every patient and every family member is different:

Some want to continue aggressive treatment as long as possible, holding out hope for a cure. Others say they don’t want to continue if their quality of life declines.

“The biggest part is reminding yourself, it’s not about you,” said Connie Dahlin, APRN, advance practice nurse for palliative care services at Massachusetts General Hospital in Boston and president of the Hospice and Palliative Nurses Association. “It’s about the family and the family process.”

Palliative care nurses also must use their assessment and communication skills in talking to patients and families about dying and how to prepare for it.

“Every patient is so individualized,” said Debbie Grabeel, RN, palliative care nurse manager at Parkland Health & Hospital System in Dallas. “We have patients who do not want to discuss it, do not want to talk about end of life.” In some cultures, talking about someone’s death is forbidden. “It’s hard to find that fine line,” Grabeel said, “but most of the time, the patients know.”

Many patients feel relieved when the palliative care team steps in, she said. “At that point, they feel like, ‘Wow, I’m finally with somebody who really and truly cares. I’m finally with somebody who is not going to abandon me.’”

Wish fulfillment

Palliative care gives nurses a tool to help in advocating for patients who decide they don’t want to continue aggressive treatment, nurses who work in the field say. In the past, nurses dealt with the situation as best they could, said Marlene Roman, RN, MSN, ARNP, CMSRN, medical/surgical clinical nurse specialist at North Broward Medical Center in Pompano Beach, Fla., and former president of the Academy of Medical-Surgical Nurses.

“The physician would say, ‘Let’s do this,’ and the patient would tell me, ‘I really don’t want to have that done,’” Roman said. She would tell the patient, “You need to talk to your doctor, you need to tell him no.” Sometimes, the physician would take it personally because he or she didn’t want to lose the patient, Roman said.

She recalled taking care of a renal patient about 20 years ago who was brain dead because the physician could not let his patients go.

“We could have probably saved the family days’ worth of coming there every day, knowing there was nothing we could do,” she said. “It doesn’t seem like we have those kinds of issues as much now.”

Part of the work of the palliative care team is supporting physicians who have a difficult time letting a patient go, said Alina Egerman, RN, MA, CNS, BSN, clinical nurse specialist and coordinator for the supportive care team at Providence Portland Medical Center. “That’s all they know. That’s what they do best,” she said. “We help them see that death isn’t the enemy and that they haven’t failed.”