Palliative care program helps patients in making end-of-life decisions

Norbert von der Groeben

From left: Sandy Chan, Judy Passaglia and Stephanie Harman help to oversee the palliative care program at Stanford Hospital & Clinics.

Georgia Sue Huston knew she was really sick. Every time the 82-year-old woman tried to turn over in her bed in the coronary care unit at Stanford Hospital & Clinics, she’d panic because she couldn’t get enough air and because it hurt so much.

In an effort to ease the pain, Laura Heldebrant asked the hospital’s palliative care team to visit her mother. “I’m an ICU nurse here at Stanford, and I’d seen them help other patients and their families,” she said. “But I didn’t think my mother’s situation was end-of-life.”

It turned out Huston had pulmonary fibrosis, end-stage lung disease. She’d known for some time that she was ill, but she hadn’t been able to get the prognosis. The palliative care team answered her questions. Face to face.

“My mom said, ‘I’ve been wanting to bring this up for a long time, I’ve been wanting to talk about this, but I didn’t know what to say,” Heldebrant recalled. “Once Judy and Dr. Bouvier talked with her, she looked relieved. She went from, ‘Oh, my God, I can’t do this,’ to being at peace.”

Courtesy of Laura Heldebrant

Laura Heldebrant (left) says that the palliative care program helped her mother, Georgia Sue Huston (right), decide how to handle her death.

Huston told Judy Passaglia, palliative care program director, and Denis Bouvier, MD, palliative care attending physician, that she wanted to be home with her children and grandchildren for her 83rd birthday. They made arrangements for her to have hospice care at her daughter’s home, and Huston was discharged on Oct. 31. She died 13 days later, in her sleep.

“The important thing is that the palliative care program created an environment that allowed my mom to say what she wanted,” Heldebrant said. “They made her comfortable, so that she could say, ‘I’ve had enough.’”

Deciding how best to care for those who are approaching their final days—and how to support their families—requires a thoughtful understanding of the process of dying and the ability to explain what’s happening as well as provide comfort. “Because palliative care is multidisciplinary, our team works to alleviate suffering beyond just the physical symptoms, acknowledging psychological, social and spiritual needs, as well,” said Stephanie Harman, MD, palliative care medical director. “For many patients, this entails attending to their troubling symptoms, as well as helping them navigate difficult decisions and face advanced disease—and facilitating communication between the patient, their family and their clinicians.”

Harman noted that the goals can vary widely. For some patients and their families, the goal of palliative care is to get out of the hospital and return home—often to hospice care provided by a community agency. Other families want their loved ones to remain in the hospital, taking their final breaths on a ventilator in the ICU. “We’re not saying, ‘Let’s take everyone off the ‘vent,’” Sandy Chan, palliative care social worker, said. “We’re asking what the patient and family’s goals are, and how we can assist in dialogue and interventions that work toward those goals.”

Now in its third year as a consult service in the Department of Medicine, the palliative care program gets requests from physicians to see patients from virtually all nursing units. They typically consult on 45 patients per month, with a team for each case that includes an attending physician, a physician fellow, an advanced practice nurse physician and a clinical social worker. When patients are faced with confusing numbers and procedures about their conditions, the palliative care clinicians translate them into lay terms. “We’ll ask, ‘Is this going to extend this person’s life, or not?’ and, ‘How is this going to impact care-giving at home?’” Passaglia said.

When a patient has limited time because of a devastating disease, Harman said a palliative care approach gives the patient control over how he spends his remaining time—often trying to weigh quality of life, versus quantity of life. “Research in the 1990s demonstrated that we as a health-care system were not taking into account patients’ preferences for end-of-life care,” she added. “Palliative care does not preclude ongoing curative treatments, but rather serves to complement a patient’s ongoing care with symptom management and support.”

Palliative care became a recognized sub-specialty of medicine in 2008, and physicians like Harman can now be board-certified in the field. The medical school now has a fellowship in palliative care, with multiple training sites, including the VA Palo Alto Health Care System, home hospice and Stanford Hospital. Barbara Sourkes, PhD, heads the palliative care program at Packard Children’s.

While many patients receive extensive hospital care in the last six months of life, staff in the palliative care program say that patients often don’t have an understanding of how such interventions will affect their quality of life and longevity and aren’t aware of palliative-care alternatives to major medical interventions.

It meant all the difference to Georgia Sue Huston and her family. “We went from doing all these tests, from aggressively treating her, to her saying, ‘I don’t want to do this anymore,’” said Heldebrant, her daughter. Friends helped care for her at home, bathing her and giving her pain medication. “Everyone came to her birthday, and she and I had time to talk,” Heldebrant said. “The whole end-of-life care was just so exquisite for my mom.”