When Virginia Martin was dying, her doctor sat with her for hours "as if he didn't have another case in the world. They talked about everything, and he answered all her questions," remembers daughter Cathleen Frome.
Her family took her home to die, and although she struggled to breathe because of pulmonary hypertension, she was not afraid. Frome credits that to the "extraordinary care" provided by the University Hospital palliative care team, which told her what she could expect and helped with comfort issues.
Palliative care is often confused with hospice care, which takes place at the end of life. Palliative care can certainly aid those who are terminally ill, but it also helps those who will recover. It is an add-on that can benefit those who are chronically debilitated by a disease like multiple sclerosis or those who are in acute crisis with septic shock, for example.
And while it's long been practiced in some settings, it's fairly new to hospitals, where effort has traditionally focused primarily on treatment and cure. It's a natural there, though, says Dr. Stephen Bekanich, a hospitalist and medical director of the University of Utah palliative care team. His interest was sparked after watching his own grandma "die a terrible death" with breast cancer that had spread through her body. He says he will "carry that the rest of my life," but from that experience he determined to help other families do better.
Palliative care is also not an "either/or" service. "Patients can be as aggressive as they want with treatment and we can still be involved," nurse practitioner Ginger Marshall says.
University Hospital launched its team three years ago at the behest of its board of directors, and the service has evolved. It started with the hospitalists — physicians who work inside the hospital as a kind of general practitioner. Because only about one-third of the cost of palliative care lends itself to direct billing, the team raises most of the cost of the care it provides. It becomes involved when invited by an attending physician, Bekanich says.
He describes the difference as patient-centered care in a setting where care is traditionally disease-centered. "We're not about treating the underlying illness. We leave that to the doctors taking care of them. Our philosophy is to treat the patient and family, because when someone gets sick, their family members don't do well either," he says. So the team looks at symptoms, as opposed to the underlying disease, including pain, nausea, vomiting, agitation, sleep patterns, itching, bowel problems, etc. "If you have a multiple-disciplinary team looking at this, with their different backgrounds, in the vast majority of cases, these distressing symptoms are treatable."
The team includes four primary clinicians — Bekanich, nurse practitioners Holly Martinez and Ginger Marshall, and geriatrician Dr. Amanda Lund — a social worker and the chaplain, among others.
Besides symptom management, they emphasize communication and education. "Part of getting sick is losing the sense of control over life. With information, you help stay in control," Bekanich says.
If a patient has pain — and certainly not all of them do — that's dealt with first. But treatment goals are just as important and team members spend a lot of time discussing with a patient what they do and don't want to see happen in the course or their treatment.
Kathie Supiano describes meetings with families that provide information, but also elicit feelings about treatment options. The palliative care is also a chance to slow down, she says, which is important in a crisis. "It's hard to convey the time pressure that exists in health care now. It's a privilege to be able to slow down and join with other providers and families and remember that this is time well spent. And it saves health care extraordinary amounts of money. " When patients understand an intervention is not likely to enhance the outcome, they make better choices about what resources to utilize, she says.
"I think the palliative care team allows for patients and families to have some autonomy about their care and how their own personal values and beliefs can be recognized and honored in their care plan, whether for a chronic illness or an end-of-life issue," says Susan Roberts, chaplain. "I think they are specifically intentional about honoring people's values and beliefs."
The program is now expanding. Marshall and Martinez, both board-certified as hospice and palliative care experts, are also beginning to see palliative care patients in the outpatient clinic as well.