When Jen Farr’s mother, Gail, was diagnosed with advanced colon cancer, both mother and daughter were initially reluctant to accept an offer of early palliative care at an outpatient clinic.
After all, Gail Bowers, a strong and seemingly healthy school secretary and mother of three, was only 51 when the Stage 4 cancer was discovered. They wondered: Would embracing palliative care mean surrendering to the disease?
Ms. Bowers decided to accept the offer and went on to participate in a study at Toronto’s Princess Margaret Cancer Centre that found providing palliative care to cancer patients before they are on the verge of death improves their quality of life and satisfaction with their treatment.
“They were really great in explaining to us [that] palliative care is really about helping the patient to maintain the quality of their life for as long as possible,” Ms. Farr recalled. “It kind of shifts the definition of the standard way you think of palliative care.”
The findings, published this week in the medical journal The Lancet, suggest there are benefits to thinking more broadly about the role palliative care can play in managing the pain and psychological well-being of the seriously ill – even when those seriously ill patients have years to live.
There is even a move afoot to rebrand palliative care as “supportive” care in a bid to make it a less frightening prospect for patients, according to Camilla Zimmermann, lead author of the new study and head of the palliative-care program at University Health Network, which includes Princess Margaret.
The study involved 461 advanced cancer patients with life expectancies between six months and two years, 228 of whom were offered early access to palliative care at an outpatient clinic, while also receiving chemotherapy or other treatments to fight their cancers.
The rest received traditional oncology care and referral to palliative care when they had less than two months to live.
Patients in the intervention group – including Ms. Bowers – met roughly once a month with a doctor and nurse trained in palliative medicine for an assessment and to talk about their pain, fatigue and other symptoms. Nurses and sometimes doctors followed up by phone, too.
By the four-month mark, patients who attended the palliative-care appointments reported higher scores for quality of life, patient satisfaction, symptom management and medical interactions than their counterparts in the control group. The differences were not as stark at the three-month mark.
“I think there is a lot of stigma associated with palliative care,” Dr. Zimmermann said. “It was very clear that even in the intervention group the connotation of palliative care, at least initially, was a negative and frightening one. Once they’d seen our team, they saw we weren’t really very scary at all.”
That was Ms. Bowers’s experience, her daughter said. When Ms. Bowers moved on to the cancer centre’s palliative care unit a month before her death in May, 2009, at the age of 54, she already had a tight bond with a palliative-care doctor.
“When you’re dealing with cancer, there’s so much you don’t know,” Ms. Farr said. “If you have … this additional sounding board in the palliative unit, it gives you that extra resource that can help you.”