In 2008, Dr. Nageswaran developed the first pediatric palliative care program at Brenner Children’s Hospital. More than 200 children have received care from the program. She also conducts research on improving the health care of children with complex chronic conditions and works with multiple community agencies to improve communication between hospital-based and community-based providers. In addition, she teaches pediatric palliative care to medical students and resident physicians.
Dr. Nageswaran “is knowledgeable and skillful; compassionate to children and their families; and intellectually curious – characteristics that make her a role model for residents and medical students,” wrote Dr. Jon S. Abramson, Weston M. Kelsey Professor and Chair, Department of Pediatrics, Wake Forest University School of Medicine, in nominating her for the award.
“I appreciate the passion that she has about palliative care and its benefits to the patients,” wrote a Wake Forest medical student who supported Dr. Nageswaran’s nomination. “She cares about the well being, the comfort, and psychological care of the family and patients. It is very important that we encounter physicians who care about their patients and want to do what is best for them despite their prognosis.”
Dr. Nageswaran received her MBBS (the equivalent of a medical degree) from Kilpauk Medical College in India in 1991. She trained as a pediatric resident at Wake Forest and as a preventive medicine resident at the University of North Carolina at Chapel Hill, where she also earned an MPH.
Q and A With Savithri Nageswaran
What are specific hurdles in providing palliative care for children in 2021?
We have made a lot of progress in providing palliative care for children in the U.S. However, there still are many barriers. A major barrier, from my perspective, is how to sustain pediatric palliative care programs. Pediatric palliative care is an interdisciplinary field. I just cannot provide good-quality pediatric palliative care to seriously ill children without the help of nurses, social workers, child life therapists and other interdisciplinary team members. While physician services are reimbursed by the current healthcare financing system, none of the services of my nursing and social work colleagues is reimbursed by health insurance. So, we depend heavily on institutional support and philanthropy to fund our program. This makes it very difficult to sustain pediatric palliative care programs like ours. Another major barrier is the lack of pediatric hospice and palliative care services in the community. Hospices do a very good job of caring for adults with serious illnesses. However, for various reasons, hospices have limited capacity to provide hospice and palliative care to children. This is a barrier in providing palliative care to children in the community. Thanks to advances in technology, more children with serious illnesses are surviving and many are living into adulthood. We really need to have the workforce to provide palliative care not only for children and their families, but also for those surviving into adulthood.
How has this changed from your early study and research in the field?
One of the positive changes in our country for pediatric hospice and palliative care is the “Concurrent Care” provision within the 2010 Affordable Care Act. This provision enables children to receive hospice care at the same time as cure-oriented treatment. We also know that the pediatric palliative care workforce is growing, albeit slowly. There is also greater awareness, recognition, and research about the importance of pediatric palliative care. All these are positive changes. However, we have many barriers as I mentioned above. Nationally, many organizations are working on overcoming barriers in advancing pediatric palliative care. I am a member of the Pediatric Palliative Care Task Force of the National Coalition for Hospice and Palliative Care that was formed to advance the field of pediatric palliative care. You can check out their website at: https://www.nationalcoalitionhpc.org/pediatric/
In your opinion, what is changing within the medical school system when it comes to palliative care education for medical students in general?
I think there is increased awareness about palliative care education in medical schools compared to 15 years ago. Now, there are curricula for medical students and resident physicians in palliative care; these were not there before. In the past, very few students did clinical rotations in palliative care mainly because there were not opportunities for clinical rotations – this has changed for the better. As a result, more students are undergoing training in palliative care. Also, more faculty are interested in teaching palliative care, and are teaching that systematically (e.g. by creating palliative care curricula) to medical students.
Are you able to provide an example of how palliative care may relieve the suffering of a pediatric patient and their family members?
I can give many examples. But here is one – Recently, our team took care of a 12-year-old child with a rare genetic condition. We have known this family for about 6 years. At different time points, we addressed different needs of the child and her family including managing her symptoms, guiding the family in making medical decisions, managing inter-current illnesses, and more recently end-of-life care. Medical procedures and being in the hospital caused enormous suffering for this girl. Her parents solicited the child’s goals about her own health care. We, in turn, aligned what we did for the child with the family’s goals for the child. We worked with her pediatrician, specialists, and hospice providers in this process throughout her illness. A couple of months ago, she died peacefully at home in the arms of her parent surrounded by her family. While we could not prevent this child’s death, we made sure that suffering from the illness is alleviated. This, to me, is what is possible with palliative care.
What are your most recent publications or research projects you are working on?
Our team is working on a few research projects. First, we are conducting a clinical trial of a new model of collaborative care between home health nursing, our complex/palliative care program (Pediatric Enhanced Care Program), and primary-care physicians for children with complex medical conditions. We are testing to see if this model improves health outcomes of children and reduces caregiver stress. We finished a project about decision-making about tracheostomy where we interviewed parents about their experiences and perspectives about tracheostomy for their children. We have published a few papers from this project that might interest families considering tracheostomy for their children. Our team has also published several papers about home health nursing services for children with medical complexity highlighting the importance of home health nursing and gaps in services. We have also worked on describing the unique challenges faced by Spanish-speaking caregivers of children with medical complexity. Finally, we just started working on a research project to understand the benefits and challenges of telehealth services for children with complex medical conditions.
You can see our recent publications
https://www.ncbi.nlm.nih.gov/myncbi/collections/mybibliography/
If readers would like to reach you, how would they?
Readers can check out our website at Brenner Children’s Hospital at https://www.wakehealth.edu/Specialty/p/Pediatric-Palliative-and-Complex-Care