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NCCN 2016

Patient and Provider Perspectives on Palliative Care Discussed at NCCN

Surabhi Dangi-Garimella, PhD
During the opening session at the National Comprehensive Cancer Network 21st Annual Conference, healthcare providers came together to discuss palliation from the provider and the patient perspective.
During the opening session at the National Comprehensive Cancer Network 21st Annual Conference, in Hollywood, Florida, healthcare providers came together to discuss palliation from the provider and the patient perspective. The session, Palliative Care: Providing Comfort from a Patient and Provider Perspective, was moderated by Toby C. Campbell, MD, MSCI, associate professor and chief of the palliative care program, University of Wisconsin School of Medicine and Public Health. He was joined on the panel by Maria Dans, MD, assistant professor, Department of Medicine, clinical director of Palliative Care Services, Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine; Sophia Smith, PhD, MSW, associate professor, Duke Cancer Institute; and Carri Siedlik, APRN, ACHPNFred & Pamela Buffett Cancer Center. The panel also had a family member advocate, Shirin Malekpour, PhD, University of Wisconsin-Madison.
 
“Palliative care has a lot of different aspects,” Campbell said. “We’ll focus today on cutting-age palliative care as we build the infrastructure to meet palliative care needs of cancer patients, and this is much upstream from end-of-life care and hospice.”

Campbell then invited Malekpour to share her experience with her mom.

“My mom was a pediatric hematologist/oncologist in Iran,” said Malekpour. She explained that she was a pathbreaker in her own right, who led the fight for women’s rights to make decisions and gain access to services like birth control. She was diagnosed with stage 3 ovarian cancer and died within 18 months, Malekpour told the audience. “Although my husband was aware of palliative care, being a hematologist himself, and my mom being a doctor, we were so physically and emotionally drained that we did not know the right questions to ask,” Malekpour said. She added that the medical team at the hospital was underprepared for palliative care, and that they were aware of palliative services only because her husband worked at the same hospital.

She narrated an incident that occurred during her mother’s treatment. “One night a fellow came late to the hospital when [my mother] was vulnerable and alone. He got a [do not resuscitate] signature from her. It made us really upset…not that we did not agree with her decision. It was just how it was handled.” She said that was when they ended up getting palliative care, but only because her husband was a part of the team.

Campbell said that all oncologists provide palliative care, explaining that it can be primary palliative care (such as what primary care doctors provide), secondary palliative care (what all oncologists provide), and tertiary palliative care (expert level palliative care). “A section of your patients could be referred to an expert palliative care specialist,” Campbell said.

Duke has been partnering with a company called Reimagine, which educates patients on 4 typical conversations on palliative care. The program provides online content and group-facilitated meetings led by a social worker. Patients can get conveniently get together with their peers, online. The end goal, Smith explained, is to improve the patient’s and their caregiver’s situation, improving communication with providers. Patients are also encouraged to complete their advance directives.



 
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