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 surgery left him paralyzed on one side.
“They said (his tumor) was a bad one,” Rozanne recalled. So many questions and decisions faced the rural Steuben County 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.
“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.
HELPING ANY PATIENT AT ANY STAGE
Palliative care, according to the New York-based Center to Advance Palliative Care, is appropriate for any age individual and at any stage of a serious illness, whether that illness 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 the 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.
Patients in palliative care services can still be receiving curative treatment. Palliative care is most often provided at a hospital or at least initiated there, but it can also be provided on an outpatient basis if 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 who received both standard treatment plus palliative care showed greater improvements in both mood and quality of life over the standard care-only group.
Palliative care services reduce hospital costs. Patients receiving services have been shown to have shorter hospital stays, less time in intensive care and fewer ER visits. A study out of 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.
One of the key components in specialty palliative care is helping patients and families have goals of care discussions, including talking through advance directives, said Debra Geradot, palliative care coordinator for Lutheran Hospital. 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.
REFERALLS 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 (CAPC).
“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. Physicians are now allowed to bill Medicare for end-of-life counseling.
Esch cites two other key reasons for failure or delays in palliative care referrals: lack of access because of too few specialty-trained palliative care physicians; and physicians, in general, inadequately trained and 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 IU School of Medicine’s Fettig is passionate not only about teaching graduate physicians who want to earn a subspecialty in palliative care and work in the field full time, but also in helping 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 hospital 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. 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.”
This article was written with support from the Journalists in Aging Fellowships, a program of New America Media and the Gerontological Society of America, sponsored by the Scan Foundation. In November, Jennifer Boen was invited as a returning fellow to attend the Gerontological Society of America’s Scientific Meeting in Orlando.
Jennifer L. Boen is a freelance writer in Fort Wayne who writes frequently about health and medicine. This column is the personal opinion of the writer and does not necessarily reflect the views or opinion of The News-Sentinel.