Stories about: palliative care

Dispatch from the Dominican Republic: Partnering for cancer pain and palliative care education

nurses doctors clinicians palliative care pain medicine childhood cancer Dominican Republic
Lisa Morrissey (center, in blue) and clinicians from UHOP and Dana-Farber/Boston Children’s.

Pediatric cancer is curable when diagnosed early and treated appropriately; the survival rate for all childhood cancers surpasses 80 percent in most high-income countries. Yet in mid- to low-income countries, basic elements of pediatric oncology care are often lacking and outcomes are grim, with survival rates of 40 percent or less.

“Twinning” is a model where pediatric oncology programs in high-income countries partner with cancer centers in low-income areas to share expertise, resources and technology. One such example is the partnership Dana-Farber/Boston Children’s Cancer and Blood Disorders Center formed in 2011 with the Unidad Hemato-Oncologia Pediatrica (UHOP), the pediatric oncology program at the Hospital Infantil Dr. Arturo Grullon in Santiago, Dominican Republic. …Read More

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Overcoming (mis)perceptions of palliative care

Esmé Savoie Hillary Savoie Thriving palliative care PACTWhen friends first suggested to Hillary Savoie that she think about taking her daughter Esmé (who has a complex, undiagnosed disorder) to see a palliative care specialist, she was shocked.

“I know that most people hear ‘palliative care’ and think very specific things about end of life care,” Hillary writes in a post on our Thriving blog. “I did, certainly.”

In talking to Boston Children’s Pediatric Advanced Care Team, though, she came to recognize the true nature and value of palliative care and its focus on Esmé’s quality of life, and how it could benefit the whole family.

“[I]t is such a relief to have a group of people I can talk to about the larger picture of Esmé’s care,” she writes. “I recognize that there is a limit to the support they will be able to provide, of course…but it feels really good to have the extra support there.”

Read Hillary’s whole story on Thriving.

 

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We must do better for our most seriously ill children

child palliative care advanced illness

How is it that, in this day and age, a talented teenager treated for lymphoma emerges cured but with a life-threatening eating disorder? How is it that, in our nation’s capital, a boy dying at home from neuroblastoma experiences excruciating pain in his final moments? How is that, when we develop new drugs to treat children with cancer, we do not, at the same time, routinely and in a standardized manner ask them how they are feeling?

As a pediatric oncologist and palliative care physician, I was alarmed by stories like these at the recent Institute of Medicine Workshop on Comprehensive Care for Children with Cancer that I co-chaired. Rather than being buoyed by how far we’ve come since I began this work two decades ago, I left chastened by how far we still have to go. …Read More

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