Groundbreaking City of Hope study explodes myths about palliative care
October 7, 2015 | by Abe Rosenberg
When Beverly Fairbairn was invited to join a major City of Hope study on palliative care as part of her treatment for lung cancer, she was taken aback.
“Are you talking to me??” she remembers thinking. “But I feel fine right now. I'm not there yet.”
Like so many others, Fairbairn assumed palliative care was little more than crisis-level pain control for patients in their final days. Fairbairn's cancer was in remission. She was healthy. The mere suggestion that she be included in the study stirred up a little paranoia: “Do they know something I don't?” she wondered.
Turns out, thanks to Fairbairn and her fellow participants, we now know a lot more.
Funded by the National Cancer Institute and five years in the making, the just-completed City of Hope study upends long-held beliefs about palliative care, particularly about who should receive it, and when. The data, published in the Journal of Pain Symptom Management, makes three key points indisputably clear:
- Palliative care isn't just for patients at the end of life; it provides clear benefits even at the earliest stages of a disease.
- Done properly, palliative care goes far beyond simple pain control, providing a wide range of physical, psychological and spiritual assistance.
- Family caregivers need and benefit from palliative care every bit as much as their patients.
The study tracked 491 lung cancer patients, many of them at Stage I, and their caregivers, during a unique 12-week, intensive, cross-discipline program. They filled out detailed, very personal questionnaires about their lives, their concerns and their needs. They attended classes. They received special educational materials. Most important, they were matched with a team of specialists ready to help: Doctors, nurses, physical therapists, dietitians, social workers, chaplains and more.
‘Even people who will eventually be cured need it’
By design, this model of palliative care was considerably more elaborate than standard programs at many hospitals. The study's results appear to confirm that the broader the care, and the earlier it's deployed, the better it works, not only in controlling pain and reducing symptoms, but also in elevating quality of life, easing stress, even enhancing spiritual well-being, all worthy goals ... at any stage of illness.
“Palliative care should begin at the time of diagnosis,” said Betty Ferrell, Ph.D.,R.N., City of Hope's director of the Nursing Research and Education and the study's principal investigator. “It shouldn't wait until death is near, pain is out of control and families are panicked. When you start early you can be more proactive and holistic. Even people who will eventually be cured need it.”
With 35 years in the field as an oncology nurse and researcher, Ferrell isn't easily surprised. She expected to see many of the positive outcomes indicated in the study. What makes this research so important, she says, is its size and scope. “This is the third such study in recent years and the one with the largest sample. We're establishing a clear pattern here. It's going to get people's attention, change old ideas, and help us write better guidelines for palliative care going forward.”
Then again, Ferrell did find herself surprised, more than once.
‘Patients won’t tell you what you don’t ask’
“This work opened our eyes,” she said. “We learned so much about our patients and the loved ones who care for them. They told us so much we didn't know, because we finally asked the right questions. Patients won't tell you what you don't ask. But if you say to them, 'You know, others in your situation often worry about things like paying the bills, family stress, talking to the kids..., how about you?' they really open up, and you get a more complete picture of the 'person around the tumor'.”
It was also the first time anyone had so carefully examined the effects of enhanced palliative care on family caregivers, side-by-side with the patients themselves. The City of Hope study revealed significant benefits to caregivers, ranging from improved preparedness to reduced stress and lower care burdens.
This was especially meaningful to Ferrell who spent many years as a home care specialist and saw the family caregiver dynamic up close. “With family caregivers,” said Ferrell, “we didn't fully realize how powerful their role is, how strong their needs are, and what happens to them: quitting work, losing their main source of family income, losing most or all of their savings, and making substantial lifestyle changes. Unless you embrace who these people are, you miss so much.”
Another surprise: How much spirituality matters, independent of religion.
“Some patients may be religious,” says Ferrell, “but they're all spiritual. It means different things to different people. It could be as simple as wanting to be a better person, leave a legacy, be in harmony with nature and the universe. Even atheists benefited from palliative care with a spiritual component.”
Family caregivers benefit too
Despite her initial reluctance to join the study, cancer survivor Fairbairn is glad she did.
“I so appreciated the intervention,” she said. “How they paid more attention to everything.” That extra attention took many forms, from treatment for chemo-induced nausea, to providing a social worker who counseled Fairbairn's two adult sons on end-of-life issues. Fairbairn even benefited from the family caregiver component, learning how to better handle the stress of assisting her husband, who had a stroke a decade ago. To improve the plan even further, Fairbairn recommends more patient-to-patient support networks. “It really does help,” she said.
Such enhanced, multidisciplinary palliative care dovetails perfectly with City of Hope's 'body and soul' philosophy. But it also costs more, a factor every budget-challenged hospital will have to face. Ferrell and her fellow researchers believe the added costs are more than offset by potential savings, much as a preventive care regimen reduces the need for acute, crisis-level care later on.
Besides, dollars aside, pretty much all agree, there's no turning back.
“We have to do a better job of understanding people's real lives,” said Ferrell. “A patient is not just someone in a gown.”
Added Fairbairn, who “really misses” all that extra care now that the study's ended: “It's so much nicer to have a total action plan, instead of just waiting for the next CAT scan.”
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