Empowering family partners
Genevieve V. Foley '66 spent 10 years as a pediatric nurse at Massachusetts General Hospital in Boston before moving to New York's Memorial Sloan-Kettering Cancer Center, where she was director of nursing practice and director of pediatric and surgical nursing. Foley later served as vice president for patient care services and chief nursing officer at St. Jude Children's Research Hospital in Memphis, where she piloted a family-centered model of pediatric care. A lead volunteer at the American Cancer Society for more than 30 years and former editor of the journal Cancer Practice, Foley is currently co-editing and writing a chapter for the fourth edition of Nursing Care of the Child and Adolescent with Cancer and Blood Disorders.
Q: What are the most important things we should know about pediatric palliative care?
A: One of the concepts about palliative care is that it isn't hospice care, it isn't end-of-life care. It doesn't start when the child starts having very difficult pain or things aren't going well. It's a process that begins so much earlier than that, and is really aimed at symptom relief, at care and comfort. It is much more concerned about the family, and making sure that the philosophy extends to the child's siblings and parents and grandparents and all the members of the family.
Q: Are there particular challenges with this type of nursing?
A: To me, the challenge is around the issue of families as partners. At the very beginning, when the child is diagnosed, the family just relies so heavily on the integrity of the team to give them information, to give it to them in a truthful fashion, to make sure that it's broad, and that it encompasses everything
they need to know.
Then you get into the next phase, where the families begin to learn on their own. They connect with other families, they use the educational resources. And then you get kind of into the third phase, where parents are partners. And in that situation, they not only are a partner in their child's individual care, but they're participating on committees, looking at the design of the unit, or at what kind of educational programs should be offered. They really begin to enter the fabric of the organization and contribute on a higher level.
That whole process really takes people in the organization being willing to give up some of their authority, their territory. And that is extremely hard to do, particularly in very traditional organizations, where the health care provider knows best.
Q: It sounds difficult. What are the rewards in this type of nursing?
A: Just tremendous satisfaction. When you have parents who are functioning at that level, it is really incredible. They have a unique body of information to contribute.
Q: What are some of the things you've learned from patients and their families?
A: You bring to your patients and their families who you are as a person.
I think on a personal basis, you learn a tremendous amount about yourself, and what your personal limits are—how close you can get to patients and families and still be able to function as a health care professional. Because most often, they don't need another friend, they need the best health care professional they can possibly have at their side.
And then I guess another thing is you learn how generous people are. These families welcome you into their lives, and what will be, in most cases, the most important thing that happens in their family.
As a health care professional, you can't always change the outcome. You hope you can. You hope you can give cure to everybody, and you're hoping that in the process they will have all the elements of palliative care—good symptom management, good psychosocial support, and proper education. But especially for those kids who don't have it, you want to look and see if you can help this be the most growth-producing experience it can be for the whole family. ✹