Newswise, April 21, 2016 – An ingrained stigma attached to the label “palliative care” among cancer patients, families and healthcare providers impedes earlier access to supportive care that improves quality of life, shows new research from Princess Margaret Cancer Centre published today in the Canadian Medical Association Journal (CMAJ).
The findings signal the need to rebrand palliative care, says principal investigator Dr. Camilla Zimmermann, to ensure the full spectrum of supportive care is offered to improve quality of life from the moment of diagnosis through the course of illness.
Dr. Zimmermann, Head, Palliative Care Program, UHN and Medical Director, Al Hertz Centre for Supportive and Palliative Care at the Princess Margaret, is a clinician-scientist who also holds the Rose Family Chair in Supportive Care, University of Toronto. She talks about her research at https://www.youtu.be/DerR61coVbc .
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.
In that study, half the participants received early palliative care intervention in the outpatient clinic setting in addition to standard cancer care.
The other half received standard cancer care. Participants had advanced cancers (lung, gastrointestinal, genitourinary, breast and gynecological) and estimated survival of between 6-24 months. The published findings showed improved quality of life for the group that received early palliative care intervention (The Lancet, Feb. 19, 2014).
In the follow-up study, says Dr. Zimmermann, “initially, both groups perceived palliative care as synonymous with death; as care at the end of life in a setting where they would die, and in general as a frightening, anxiety-provoking thing they wanted to avoid.”
For the intervention group, however, the perception changed. “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. “
But, she says, despite a positive experience, participants in the intervention group still felt stigmatized by the label palliative care. “Patients told us if palliative care were called something else, they wouldn’t feel so stigmatized.”
Dr. Zimmermann adds: “Importantly, the source of this stigma was mainly in the medical system because doctors and nurses had given the impression that palliative care was only end-of-life care. Another source of stigma was media. So I think those are two powerful institutions where we could effect change and give a different perception to families and caregivers about what palliative care really is.”
Although the World Health Organization broadened its definition of palliative care in 2002 to state “palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life”, definitions are inconsistent and confusing, says Dr. Zimmermann.
“Until there is a consistent definition of palliative care that is promoted by those referring patients and collaborating in their treatment, it is unreasonable to expect that patients and families will embrace a broadened conceptualisation of palliative care.”
And exactly what is palliative care? Dr. Zimmermann explains: “Palliative care improves quality of life in many different domains. Symptom control is an important domain; and this means managing pain, nausea, shortness of breath, sleep, depression and anxiety.
“Palliative care improves support for the family at home; it gives practical support for planning for the future, and also for how to get through every day. And it provides spiritual support.”
Dr. Zimmermann says: “So we have a branding issue and that’s the central message of this research. Although the definition has changed, we are not promoting it in the right way in the health care system.
“We need to do is promote the message and do so in actions as well as words that palliative care is supportive care that improves quality of life throughout the course of illness. It is not something to be afraid of or that is stigmatizing, but is helpful even while patients are receiving life-prolonging therapies.”