Inspired by Personal Experience

Pediatric palliative care nurse practitioner provides guidance and resources to families facing a difficult journey

It is often said that we cannot truly understand others, until we have walked a mile in their shoes. Perhaps no one appreciates this better than Aminah Fraser-Rahim, CPNP, a pediatric palliative care nurse practitioner at MUSC Children’s Health. “Literally, the same day I was offered my first job as a nurse practitioner, thirty-minutes later I got a call from my radiologist saying I had invasive ductal carcinoma–I had breast cancer,” says Fraser-Rahim. With her doctors recommending aggressive treatment including chemotherapy, immunotherapy, and multiple surgeries, Fraser-Rahim had to put her plans on hold. “I went from being on cloud-nine to having to drop everything and focus on my health.”

Fraser-Rahim comes to MUSC from nine years as a Clinical Coordinator/Nurse Manager in private practice at Parkwood Pediatrics in Charleston, SC. She completed her Bachelors of Science in Nursing at the Medical University of South Carolina and also finished her master’s and doctoral training in general pediatrics at MUSC.

For Fraser-Rahim, working in palliative care suddenly made sense after her own experience with breast cancer. “When I got through most of my treatment and re-started my job search, one of the first positions I saw was in pediatric palliative care. I’d spent three semesters with a palliative care team during my nursing residency, and I absolutely loved it. But, at the time, I didn’t think I had that deep level of sincere empathy that it takes to be a really good palliative care nurse practitioner. After my own journey as a patient–not a provider–I felt like I’d found what I was supposed to do,” says Fraser-Rahim. “Every day makes me believe that I am here for a reason, and one of those reasons is to serve people through palliative care.”

The field of palliative care has evolved, and many people do not understand how palliative care specialists can help them. “There’s a negative connotation that it’s only for people who are nearing death, but that’s not the case,” says Fraser-Rahim. “Our purpose is to be a support team and provide resources for parents and children facing a life-threatening or life-limiting diagnosis.” Palliative care teams focus on alleviating stress, recommending symptom management strategies, and providing medical, emotional, or spiritual guidance for patients and families during their hospital stay. The team is a consistent presence during their medical journey, which may include multiple treatments over time. “Our job is to do everything we can to make a terribly difficult journey easier in a way that is meaningful to that individual family, and to let them know they’re not alone,” Fraser-Rahim explains. “We make sure they understand the medical information they receive and that their options are clear to them. We’re an interdisciplinary team that’s able to cover a broad spectrum of spiritual and social needs. And, yes, there are times when our role is to assist patients and families in processing grief and walking through a bereavement experience.”

People in many different situations can benefit from having a skilled palliative care team to lean on for support. The MUSC pediatric palliative care team works across a highly diverse range of care areas. They are called to work with parents at the advanced fetal care clinic when pre-natal testing uncovers a serious condition that may change their birth experience. They also work with children and their families after a new diagnosis of life-limiting or potentially life-threatening illness. “We care for patients and their families at all stages of an illness–ideally from the beginning–but we’re able to meet and help them where ever they are in their medical journey. We see every day, every patient, every family, and every diagnosis as unique. That’s what makes our interdisciplinary palliative care team so valuable,” says Fraser-Rahim.

Fraser-Rahim sees patients at MUSC’s Shawn Jenkins Children’s Hospital in downtown Charleston. If you would like to make an appointment with Fraser-Rahim or refer a patient, please call 843-876-0444.