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.”
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