Palliative Care Study Exposes Stigma, Calls for Rebranding to Improve Support for Patients, Caregivers

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.”

‘Invisible Work’ Takes Toll on Unpaid Caregivers

Family and friends who help with health care more likely to experience emotional, physical and financial difficulties

Newswise, February 21, 2016 — Unpaid family and friends who assist older people with disabilities by coordinating doctor appointments and managing medications are significantly more likely to experience emotional, physical and financial difficulties than caregivers who don’t provide this type of support, new research finds.

Johns Hopkins Bloomberg School of Public Health researchers, reporting in the Feb. 15 JAMA Internal Medicine, say such caregivers are also three times more likely to be less productive at work due to distraction and/or fatigue, a phenomenon called “presenteeism,” as well as outright absenteeism. Researchers say this shows that there is a significant – and often unrecognized – cost borne by employers.

“A lot of work goes into managing the care of people with complex health needs, and this work is borne not only by health care providers and patients, but also by their families,” says Jennifer L. Wolff, PhD, an associate professor of health policy and management at the Bloomberg School.

 “Little attention has been directed at understanding the extent of or consequences for this unpaid and invisible workforce that is vital to the care of the chronically ill. Our study aims to do that.”

The study finds that in the United States, an estimated 14.7 million unpaid caregivers, most of them family, assist 7.7 million older adults. Of those, 6.5 million caregivers provide substantial help with health care, 4.4 million provide some help and 3.8 million provide no help.

For their study, the researchers examined data from 1,739 family and unpaid caregivers of 1,171 older adults included in the 2011 National Health and Aging Trends Study.

They found that caregivers who provide substantial help with health care activities were significantly more likely to live with the older adult they care for than those who did not help with these activities (61.1 percent vs. 37.6 percent), and they were also more likely to report caregiving-related emotional difficulty (34.3 percent vs. 14.6 percent), physical difficulty (21.6 percent vs. 5.7 percent) and financial difficulty (23 percent vs. 6.7 percent).

Caregivers who provide substantial help with health care needs also provided care of greater intensity (28.1 hours per week vs. 8.3 hours per week).

Wolff says the caregiver is often the linchpin in the health care of older adults, making sure that treatment plans developed by physicians are being carried out at home, but their role often goes unrecognized in the fragmented American health care system.

She says that caregivers need to be included and supported as members of the health care team and given greater access to information about patients’ health and treatments, which is often a challenge because of federal patient privacy laws.

Wolff says health care providers can do a better job of involving caregivers when they accompany patients to medical appointments, recognizing their key roles and more purposefully engaging them.

“The more we know about this invisible workforce, the better we will be able to develop strategies that include unpaid caregivers as part of patients’ health care team,” she says.

The study was supported by grants from the National Institutes of Health’s National Institute of Mental Health (K01MH082885), the National Institute on Aging (U01AG032947) and the Assistant Secretary for Planning and Evaluation (12-233-SOL-00434).

“A National Profile of Family and Unpaid Caregivers Who Assist Older Adults With Health Care Activities” was written by Jennifer L. Wolff, Brenda Spillman, Vicki A. Freedman and Judith D. Kasper.