Nav: Home

Palliative care study exposes stigma, calls for rebranding

April 18, 2016

(TORONTO, Canada - April 18, 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://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."
-end-
Dr. Zimmermann's research was funded by the Canadian Cancer Society, the Ontario Ministry of Health and Long-term Care, the Rose Family Chare in Supportive Care, Faculty of Medicine, University of Toronto, and The Princess Margaret Cancer Foundation.

About Princess Margaret Cancer Centre, University Health Network

The Princess Margaret Cancer Centre has achieved an international reputation as a global leader in the fight against cancer and delivering personalized cancer medicine. The Princess Margaret, one of the top five international cancer research centres, is a member of the University Health Network, which also includes Toronto General Hospital, Toronto Western Hospital, Toronto Rehabilitation Institute and the Michener Institute for Education; all affiliated with the University of Toronto. For more information, go to http://www.theprincessmargaret.ca or http://www.uhn.ca .

Media contact: Jane Finlayson, Public Affairs, (416) 946-2846 jane.finlayson@uhn.ca

University Health Network

Related Palliative Care Articles:

A COVID-19 palliative care pandemic plan: An essential tool
Palliative care physicians have created a coronavirus disease 2019 (COVID-19) palliative care plan as an essential tool to provide care and help manage scare resources during the pandemic.
MAiD is not driven by socioeconomic vulnerability or poor access to palliative care
A new study of people who received medical assistance in dying (MAiD) in Ontario found that about three-quarters were cared for by palliative care practitioners at the time of their request for MAiD, and MAiD recipients were younger, wealthier and more likely to be married than the general population at time of death.
Palliative vs. standard care for Parkinson's disease
This randomized clinical trial that included 210 patients with Parkinson's disease and related disorders and 175 caregivers examined whether outpatient palliative care was associated with better patient or caregiver outcomes compared with standard care.
Palliative care in hospitals linked to decrease in use of ICU; treatment intensity
A new study shows that implementing hospital-based palliative care services in New York State reduces treatment intensity at the end of life for hospitalized patients.
Prediction system significantly increases palliative care consults
A trigger system powered by predictive analytics increased palliative care consultations by 75 percent after its implementation
Early palliative care for advanced lung cancer increases survival
Early palliative care is associated with better survival in patients with advanced lung cancer, according researchers with the Veterans Affairs Portland Health Care System and Oregon Health and Science University.
New staffing model for an integrated specialist team approach to palliative care
The Canadian Society of Palliative Care Physicians has developed a new staffing model for specialist palliative care teams that can deliver an optimal, integrated palliative care program.
Unique case of cannabis hyperemesis syndrome in palliative care
The medical use of cannabis is growing. Medical marijuana may improve symptoms including pain and anorexia.
Site of care may affect patients' access to palliative treatment
Studies have found that racial and ethnic minorities are less likely to receive end-of-life palliative care than their counterparts.
Best practices in palliative care supported by growing evidence base, study finds
Best practices in the growing field of palliative care have been created on several occasions based upon consensus among experts.
More Palliative Care News and Palliative Care Current Events

Trending Science News

Current Coronavirus (COVID-19) News

Top Science Podcasts

We have hand picked the top science podcasts of 2020.
Now Playing: TED Radio Hour

Teaching For Better Humans 2.0
More than test scores or good grades–what do kids need for the future? This hour, TED speakers explore how to help children grow into better humans, both during and after this time of crisis. Guests include educators Richard Culatta and Liz Kleinrock, psychologist Thomas Curran, and writer Jacqueline Woodson.
Now Playing: Science for the People

#556 The Power of Friendship
It's 2020 and times are tough. Maybe some of us are learning about social distancing the hard way. Maybe we just are all a little anxious. No matter what, we could probably use a friend. But what is a friend, exactly? And why do we need them so much? This week host Bethany Brookshire speaks with Lydia Denworth, author of the new book "Friendship: The Evolution, Biology, and Extraordinary Power of Life's Fundamental Bond". This episode is hosted by Bethany Brookshire, science writer from Science News.
Now Playing: Radiolab

Dispatch 3: Shared Immunity
More than a million people have caught Covid-19, and tens of thousands have died. But thousands more have survived and recovered. A week or so ago (aka, what feels like ten years in corona time) producer Molly Webster learned that many of those survivors possess a kind of superpower: antibodies trained to fight the virus. Not only that, they might be able to pass this power on to the people who are sick with corona, and still in the fight. Today we have the story of an experimental treatment that's popping up all over the country: convalescent plasma transfusion, a century-old procedure that some say may become one of our best weapons against this devastating, new disease.   If you have recovered from Covid-19 and want to donate plasma, national and local donation registries are gearing up to collect blood.  To sign up with the American Red Cross, a national organization that works in local communities, head here.  To find out more about the The National COVID-19 Convalescent Plasma Project, which we spoke about in our episode, including information on clinical trials or plasma donation projects in your community, go here.  And if you are in the greater New York City area, and want to donate convalescent plasma, head over to the New York Blood Center to sign up. Or, register with specific NYC hospitals here.   If you are sick with Covid-19, and are interested in participating in a clinical trial, or are looking for a plasma donor match, check in with your local hospital, university, or blood center for more; you can also find more information on trials at The National COVID-19 Convalescent Plasma Project. And lastly, Tatiana Prowell's tweet that tipped us off is here. This episode was reported by Molly Webster and produced by Pat Walters. Special thanks to Drs. Evan Bloch and Tim Byun, as well as the Albert Einstein College of Medicine.  Support Radiolab today at Radiolab.org/donate.