Part of the Living to the End of Life Special Report
Rozanne and Gerald Hallman were thrust unexpectedly and severely into the land of the seriously ill when, in late 2011, Gerald, a retired pastor, was diagnosed with a brain tumor. He underwent surgery to remove as much tumor as possible, but the procedure left him paralyzed on one side.
“They said [his tumor] was a bad one,” Rozanne recalled. Many questions and decisions faced the rural Steuben County, Ind., couple.
When Gerald’s physicians discussed options and next steps, palliative care was among them. Rozanne, a retired teacher, was familiar with hospice, but unaware of palliative care as a specialized service that helps improve quality of life without necessarily abandoning curative treatment.
In medical school, the very little I got about suffering and death ill-prepared me for what I would encounter.
— Dr. Andrew Esch, Center to Advance Palliative Care
“I didn’t have a clue,” she said, but added that through those services, “our every need was met.”
Multiple studies show that, compared to awareness of hospice, “There’s significantly less familiarity with palliative care,” said Dr. Lyle Fettig, director of Indiana University School of Medicine’s Hospice and Palliative Medicine Fellowship program centered in Indianapolis.
Palliative care is now a recognized medical subspecialty, but experts in the field say lack of knowledge about it within the general public, and even among medical providers, is impeding the many benefits of these services for those who most need them.
Aids Patients at Any Stage
Palliative care, according to the New York-based Center to Advance Palliative Care (CAPC), is appropriate for individuals of any age and at any stage of a serious illness, whether it is cancer or a chronic condition, such as heart or lung disease. The goal is to improve quality of life for both patient and family through a holistic, interdisciplinary team approach.
Palliative care addresses symptom control of a medical condition, as well as side effects of treatment. Families may be connected to community services, financial resources and help for caregivers.
Hospice includes palliative, or comfort care, to relieve pain and other symptoms but, generally speaking, it is for individuals anticipated to have six months or fewer to live and who are no longer receiving active treatment.
“The reason that people get palliative care confused with hospice is that [palliative care] can be introduced earlier on,” said Kathryn Felts, a palliative care and hospice nurse practitioner with Parkview Home Health and Hospice in Fort Wayne, Ind.
Patients in palliative care can still be receiving curative treatment. Patients access palliative care most often at a hospital, or it is at least initiated there, but they can also have it provided on an outpatient basis, if it’s available.
Evidence is mounting on the multifaceted benefits of specialty palliative care services, particularly if they are introduced sooner rather than later after diagnosis. Among those benefits: lowered stress and depression in patients and caregivers; reduced pain and better control of other symptoms; and better clinical outcomes.
A landmark study, led by Dr. Jennifer Temel at Massachusetts General Hospital and published in The New England Journal of Medicine, compared outcomes among patients with an aggressive form of lung cancer. The group participants, who received both standard treatment plus palliative care, showed greater improvements in both mood and quality of life compared with the standard care-only group.
Palliative care services reduce hospital costs, say researchers. Patients receiving services have been shown to have shorter hospital stays, less time in intensive care and fewer ER visits. A study by Icahn School of Medicine at Mount Sinai in New York, led by Dr. R. Sean Morrison, found Medicaid-enrolled patients who received palliative care incurred almost $7,000 less in hospital costs during a hospital admission compared to a matched group of Medicaid patients, who received standard care.
A key component of specialty palliative care is helping patients and families have discussions about the goals of care, including talking through advance directives, said Debra Geradot, palliative care coordinator for Lutheran Hospital in Fort Wayne. Lutheran’s kidney and heart transplant patients, for example, participate in palliative care consultations prior to surgery.
Patients who receive services from a palliative care team are more likely to die at home rather than in a hospital, studies show. Even those dealing with life-altering but not necessarily life-shortening conditions are more likely to have end-of-life discussions if referred for palliative care.
Referrals Still Lag
Despite the evidence for positive outcomes, referrals for palliative care services still come too late or, in many cases, not at all, said Dr. Andrew Esch, a palliative care specialist and faculty member of the Center to Advance Palliative Care.
“Providers associate palliative care with hospice, and that’s one reason referrals come late,” Esch said. “That’s why we’re trying to clarify that,” he said of CAPC’s mission.
Esch cites other key reasons for failure or delays in palliative care referrals. First is lack of access because of too few specialty trained palliative care physicians. Second, physicians, in general, are inadequately trained and insufficiently skilled to discuss end-of-life issues.
“In medical school, the very little I got about suffering and death ill-prepared me for what I would encounter,” Esch said. “We’re trained to treat illness, not necessarily trained to treat people. We’re very much focused on treating disease.”
That is why Indiana University School of Medicine’s Fettig is passionate about teaching graduate physicians wanting to earn a subspecialty in palliative care and work in the field full time. He also wants to help medical students and new graduates “learn how to have those end-of-life conversations and help them learn to explain the risks and benefits of treatment options and goals.”
For the Hallmans, discussions with Lutheran Hospital’s palliative care staff helped solidify Gerald’s goals of care. When he was discharged to a nursing home, the Lutheran team helped him access palliative care services there through Visiting Nurse, a Fort Wayne agency
Medicare covered Gerald’s hospital palliative care and his Medicare Advantage plan covered it in the nursing home. Most private insurers cover palliative care consults.
“And when the time came,” Rozanne said, “we let them know he was ready for hospice.”
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