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The Supportive Care Program at UPMC Children’s Hospital of Pittsburgh has a long history of supporting pediatric patients and their families who are facing serious, life-limiting or life-threating conditions — be they acute or chronic. This support also extends to the providers and staff throughout the hospital who work around the clock to care for these patients. And since its inception 15 years ago — in 2003 — the Supportive Care Program has had the unwavering support of hospital administration and leadership.
Carol May, RN, MSN, MBA, CHPPN, has been the program manager since its inception, having been recruited to work to develop it a decade and a half ago. “Dr. Eugene Wiener who was, at the time, our medical director and surgeon-in-chief had some exposure to supportive and palliative care and it was his hope that we would institute a program at UPMC Children’s,” explains Ms. May.
Since its early days, the program has expanded in scope and practice and routinely sees patients from virtually every division within the hospital. Scott Maurer, MD, joined the program as one of its physicians in 2010. “Within the hospital, our largest referral source is probably from the neonatal intensive care unit, followed by cardiology and oncology, but we really do get consults from just about everywhere — nephrology, GI, neurology, and others,” says Dr. Maurer.
The program boasts a full-time bereavement coordinator who manages follow-up with all families who have lost a child in the hospital or at home. Part of this bereavement care is a 13-month close follow-up program which includes the ability to direct people to resources and grief support groups. Mailings and cards also are sent at certain times of the year to families.
In 2017, the Supportive Care Program launched Camp Wakchazi, a four-day sibling bereavement camp designed to help young children and adolescents who have experienced the loss of a sibling. The 2018 camp held in June saw more than half of the participants returning from the previous year because of the support they receive from the peer counselors and the other campers.
Formalized training and education for providers on the role and benefits of supportive care has been a part of the Support Care Program’s mission since its inception. The majority of pediatric residents rotate with the program from anywhere from one to four weeks.
“We focus a lot of our teaching on pain and symptom management, but also on critical communication skills. This goes way beyond just how to approach end-of-life conver sa tions,” says Dr. Maurer, who also spends a significant amount of time giving lectures and holding discussion groups with both students and colleagues throughout the hospital.
Ms. May coordinates ongoing education and lectures for nursing staff and other providers. “A lot of what we do is informal, one-on-one discussions that tend to tackle specific problems or cases. We provide a level of support to the clinical staff who are dealing with these often complex and difficult situations both in terms of patient and family care, but with themselves and how they are handling these and the emotions that can arise,” says Ms. May.
For the last seven years, the Supportive Care Program has conducted at one-day supportive and palliative care conference for providers. Typically offered during the month of May, the conference features a range of topics and speakers from the Supportive Care Program at UPMC Children’s and the Section of Palliative Care and Medical Ethics at the University of Pittsburgh.
Education and assistance do not stop at the front door of UPMC Children’s. Because patients are often referred to outside sources for things such as hospice or home care, Ms. May and her team are continually active in discussions and education with numerous outside groups and agencies.
“Many times, we will have hospice organizations that are primarily taking care of adult patients come in to discuss and learn more about working with children and their families. Children are a much different set of patients than adults with respect to supportive care and have special needs that must be attended to. We make ourselves available to consult whenever they need us, after hours or otherwise. We want them to contact us when they need help or need to confer on a challenging aspect of patient care,” says Ms. May.
The adoption and spread of telemedicine across medical disciplines continues. It has also come to the Supportive Care Program at UPMC Children’s through the help of a grant secured by Ms. May and her colleagues. Support and follow-up via phone has always been an integral part of the program. The recent grant has allowed for the purchase of tablet devices and a HIPAA-compliant secure connection through the hospital to provide care to patients at home. “Children want to be at home and we want them to be at home,” says Dr. Maurer, “Carol fields the phone calls and works diligently to provide the support the family needs. We have been successful over the years at avoiding countless visits to the emergency department through our work. Telemedicine and its reach will help us to continue this trend.”
The incredible amount of research being conducted at UPMC Children’s across disciplines is one of the reasons it is con- sistently mentioned as a leading children’s hospital in the United States and internation ally. This legacy of research is also part of the Supportive Care Program, one that continues to grow. Dr. Maurer explains that a new clinical investigator will be joining the system who has a special interest in quality-of-life issues for medically complex pediatric patients, a largely untapped research area in the field.
The program also is part of a large multi-center consortium working to better understand how pediatric patients progress through complex medical therapies for conditions such as cancer. “This study is unique in that the patients are able to report on their own adverse effects of chemotherapy. UPMC Children’s is one of the highest enrolling sites in this study at the moment. Ultimately, it’s a way to try and give these patients a voice in their own cancer care,” says Dr. Maurer.
There’s much on the horizon for the Supportive Care Program. “We’re already a busy practice with typically 40 inpatient visits a day, and more than 200 patients on our service at any given time, but we can do more,” says Ms. May.
There are plans to grow the bereavement program to support more children and families in the community with a longer follow-up period of two years. It is well documented in the literature that the experience of grief and loss and its accompanying issues are actually more prevalent in the second year after the loss of a child or sibling.
There also exists the desire to better reach and service the cystic fibrosis patient population with earlier involvement and assistance with advance care planning, symptom management, and the transition to adult care. “As we see more children living longer with complex, chronic illnesses who 20 years ago may not have survived into adulthood, we need to progress as a discipline to meet their evolving needs, and we need to help our colleagues do so as well. These transitions in care are critically important for everyone involved, and our work and research to facilitate, educate, and provide the best care possible in these circumstances will be a large focus for our team and program well in to the future,” says Dr. Maurer.
For more information about the Supportive Care Program at UPMC Children’s, please visit CHP.edu/SupportiveCare.
Scott H. Maurer, MD – Medical Director
Carol May, RN, MSN, MBA, CHPPN – Program Manager
Alyssa Baker, PA-C
Amanda Brown, MD
Alicia Kolling, PA-C
Lori Malazich, LCSW – Bereavement Coordinator
Heather Morgan, PA-C
Justin Yu, MD