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Patients are missing out on earlier access to supportive care, all because the stigma attached to the label “palliative care,” according to new research by U of T Professor Camilla Zimmermann, published recently in the . 

The problem, Zimmermann uncovered, is that patients viewed palliative care as equating end-of-life care, when it’s actually a much broader range of services.

“Patients told us if palliative care were called something else, they wouldn’t feel so stigmatized,” says Zimmermann, a department of medicine professor and Rose Family Chair in Supportive Care. “We have a branding issue and that’s the central message of this research.”

The researchers performed and analysed qualitative interviews with 48 patients with advanced cancers and 23 caregivers who had participated in an earlier randomized controlled study of 461 patients. Participants had advanced lung, breast, gastrointestinal, genitourinary and gynecological cancers, and an estimated survival of between 6-24 months. Half had received early palliative care intervention in the outpatient clinic setting, in addition to standard cancer care. The other half received standard care only.

Those who had received early palliative care intervention were found to have an improved quality of life — and the researchers noted a shift in perception towards palliative care itself.  

“Initially, both groups perceived palliative care as synonymous with death,” says Zimmermann. For the intervention group, however, this outlook changed over time. “They began to see palliative care as relevant early in the course of their illness and as being beneficial to them by supporting them and improving their quality of life. “

The findings signal the need to rebrand palliative care. Zimmermann believes this is essential in order to ensure the full spectrum of supportive care is offered — from the moment of diagnosis through the course of illness.

In 2002, the World Health Organization broadened its definition of palliative care, to underscore that it is applicable even at the beginning stages of an illness, and in conjunction with therapies intended to prolong life. Yet many still equate the term with end-of-life care, and medical professionals and media outlets reinforce that message.

“Palliative care is supportive care that improves quality of life throughout the course of illness,” says Zimmermann, who is also Medical Director of the Al Hertz Centre for Supportive and Palliative Care at the Princess Margaret Hospital and Head of the University Health Network’s Palliative Care Program. “It is not something to be afraid of or that is stigmatizing, but is helpful even while patients are receiving life-prolonging therapies.”