Stigma Keeps Some Cancer Patients From Getting Palliative Care
(Reuters) - Some cancer patients may turn down care that could ease their pain and improve their quality of life because they think this type of “palliative” treatment amounts to giving up and simply waiting to die, a small Canadian study suggests.
Even though the World Health Organization recommends early palliative care for patients living with any serious illness, negative attitudes among patients and family caregivers often lead them to reject this option, researchers note in the Canadian Medical Association Journal.
“Patients and caregivers in our study saw palliative care as being equated with death, loss of hope, dependency, and going into places you never get out of again,” said lead study author Dr. Camilla Zimmermann, head of the division of palliative care at the University Health Network in Toronto.
“This is in stark contrast with the actual definition of palliative care, which is interdisciplinary care that provides quality of life for patients with any serious illness and their families, and that is provided throughout the course of the illness rather than only at the end of life,” Zimmermann added by email.
Zimmermann and colleagues interviewed 48 cancer patients and 23 of their family caregivers in cases when life expectancy was six to 24 months.
The researchers randomly assigned 26 patients to receive palliative care in addition to standard cancer care, while another 22 patients had only standard care.
Twenty-two patients in the palliative care group and 20 in the control group were receiving chemotherapy.
Over four months, patients in the palliative care group had at least monthly palliative care clinic visits, while those in the standard care group didn’t receive any formal interventions. Caregivers could attend clinic visits for the palliative care participants, but they weren’t required to do so.
Patients were typically in their early to mid 60s. Most were married and had at least some education beyond high school.
Most family caregivers were spouses, but a few were children or other relatives.
Initial perceptions of palliative care were similar in both groups – patients generally thought this was done only for the dying. While patients in both groups thought of palliative care as providing comfort, they also associated it with giving up on treatment.
Once some patients received palliative care, however, their thinking shifted. Some patients now saw this as a way to live life to the fullest despite the terminal diagnosis, while others suggested that doctors might have better luck renaming this as something other than “palliative care.”
Calling palliative care providers “pain specialists” because they treat discomfort and focus on quality of life would make this sound more appealing and less frightening, some patients said after getting this type of care.
But in the control group, without any experience with palliative care during the study, patients didn’t see the point of renaming it because they thought it would still carry the stigma of giving up and waiting to die.
“Palliative care should not be framed as a last resort option,” said Dr. Anthony Caprio, a geriatrician and hospice and palliative medicine physician at Carolinas HealthCare System in North Carolina.
“These `nothing left to do’ conversations often frame palliative care as a way to help people die comfortably, rather than an approach to care that allows them to live with the highest quality of life for as long as possible,” said Caprio, who wrote an editorial that was published with the study.
Using different language in discussions with patients can make a big difference, Caprio added.
“I often describe palliative care as an extra layer of support,” Caprio said. “Who wouldn’t want more support, especially during a difficult illness?”