Pediatric Care
Where the Cellular Won’t Roam
Weston L. Rice, MSN, ACNP
Nurse Practitioner–Peds
Columbia, SC
No parent expects to spend the first year of their child’s life in the hospital, but that is exactly the challenge Ashley faced with her son.
Cody was born with a chromosomal anomaly associated with congenital hypotonia, chronic respiratory failure, gastrostomy tube dependence, epilepsy, and autonomic dysfunction. Prior to discharge from his initial hospitalization, he was referred to Hands of Hope (HOH), South Carolina’s only statewide palliative and hospice provider with a dedicated pediatric team. Over the next three years, the team served Ashley and Cody through moves across three counties in some of South Carolina’s most rural and poorly-resourced areas. Committed to providing continuity of care, HOH supported Ashley in becoming a caregiver and advocate for her son, helping Cody reach his fourth birthday, a milestone in line with her goals.
Our team provided an additional layer of support alongside Cody’s pediatrician and subspecialists with the goal of maximizing his comfort and quality of life, minimizing hospitalizations and emergency department visits, and supporting and training Ashley and her support system. Cody’s two years on hospice were peppered with times when Ashley did not think he would survive, and our team was able to help Ashley navigate Cody’s complex care while providing resources and assistance with informed decision making.
The interdisciplinary pediatric hospice and palliative care team collaborates to maximize face-to-face time with patients. Initially, Cody was referred to hospice, which provides services and support by pediatric-trained clinicians including scheduled visits with a medical provider, nurse case manager, social worker, chaplain, dietician, and multidisciplinary bereavement services. In addition to required services as defined by the hospice benefit, HOH supports patients and families by offering services from certified child life specialists. Child life specialists facilitate interactions that enhance positive relationships within the family and encourage therapeutic self-expression, emotional exploration, legacy building, and capturing joyful memories. Additionally, child life specialists educate parents and caregivers on child development, especially when it does not follow expected patterns, and provide education on developmentally appropriate ways to help children understand death and dying.
In South Carolina, the hospice benefit for those less than 21 years of age is often delivered alongside Concurrent Care for Children as defined by the Affordable Care Act, section 2302. In short, this allows for disease-directed or curative treatment to be delivered in tandem with the hospice benefit. The relationships with community providers, including primary care providers, subspecialists, local emergency departments and hospitals, promote a unique ability to wholly care for the child and family. These relationships also provide a robust system to support home-based palliative services including establishing goals of care and symptom management plans, providing psychosocial support, and offering unique perspectives on the limitations of home environments. All HOH providers have access to electronic health records (EHR) at the state’s children’s hospitals. Many of these EHRs have triggers to alert HOH staff of emergency department visits, hospital admissions and discharges, and critical lab or diagnostic results. In addition, the team has relationships with all inpatient palliative care teams in these institutions. Nurse clinical liaisons ensure smooth transitions of care, often serving as the initial face of the program with families, reviewing goals of care, and collaborating with referral sources and inpatient teams throughout a patient’s journey.
The sequelae of Cody’s chromosomal anomaly coupled with Ashley’s goals of care for him resulted in technology dependence.
Navigating the health care system is an increasingly difficult task for all, but navigating the system with a fragile, technology-dependent child while living in a rural setting away from his medical home is even more challenging.
After-hours and weekend coverage for medical guidance and skilled nursing visits are key to keeping Cody at home as much as possible, in line with Ashley’s wishes. To promote patient and family-centered care, medical providers attend subspecialty appointments and perform virtual visits in time of crisis to support, reinforce, or revisit goals of care or participate in mutual formulation of a plan of care. This interdisciplinary support eliminates communication barriers and treatment excess, and promotes smooth transitions between health care facilities and home. In addition, the psychosocial support provided promotes Ashley’s independence, coping skills, and guides her medical decision making for Cody.
Our medical providers maintain continuity of care and preserve relationships with caregivers and community providers when transitions occur between service lines because they cover both hospice and palliative service lines. As Cody grew, he outlasted his initial prognosis and his decline plateaued. He made the transition to palliative care with HOH, which offers routine visits with a medical provider and nurse case management support for care coordination. Consultations with pediatric-trained social workers, chaplains, child life specialists, and registered dieticians were provided on an as-needed basis. The palliative care team serves as an extra layer of support alongside the child’s medical home and subspecialists but does not take the place of a primary care provider or subspecialist. Like hospice, medical providers provide medical guidance, attend subspecialty visits with patients and families to promote joint formulation of plan of care, and routinely communicate with inpatient teams surrounding hospitalizations to assist with transitions.
Cody’s shift to palliative care necessitated a heavier reliance on community providers. Ashley no longer had frequent skilled nursing visits or access to on-call support. This transition is challenging for both the family and HOH team as it may occur quickly based on the hospice benefit period end of episode date. Occasionally, social work, child life, and chaplain services are continued at less frequent intervals, though this is not always possible and is a current limitation of the program. Other programmatic challenges include the inability for partnering institutions to review HOH medical records.
For children whose time with HOH ends in natural death, we provide in-home support leading up to and at the time of death by our skilled pediatric team. Funeral planning often begins at the time of admission, though this varies widely based on a child’s prognosis, treatment plan, or goals of care. This facilitates a smooth transition from the time of death to the bereavement phase of support. Our multidisciplinary bereavement team provides support throughout the 13 months following a child’s death. During this period, families receive support in various ways, including bereavement support groups, bereavement camps for siblings and families, and acknowledgement of firsts, including first birthday, holidays, and other significant family dates.
Unlike many children, Cody’s disease trajectory improved and stabilized, and he was discharged from hospice for a life expectancy of greater than 6 months. While Cody’s medical complexities and disease trajectory will likely result in future decline, hospice graduation was a cause for celebration and a time to ease fears about the future. Our multidisciplinary team organized a small gathering to look back at Cody’s journey and celebrate his future, as we do with all children who graduate. Led by child life, Cody’s celebration included keepsakes for Ashley and Cody, a graduation certificate and balloons, and a celebration of his life and future. In addition to celebration, the gathering was also a time to ease fears and instill confidence in caregivers. Many children move between the two services lines throughout their time with HOH, especially if services are introduced at the time of diagnosis. For Cody, the HOH team always stands ready to readmit him to hospice if needed.
While services and outcomes vary for the patients we serve, the right of families to receive care and support despite challenges like proximity to health care and living in rural, poorly-resourced areas of South Carolina is the same. Challenges in care delivery experienced due to rural or poorly-resourced areas are not unique to South Carolina. In addition to supporting staff development, participating in a state collaborative and engaging payors and legislators in discussions about concurrent care delivery are key steps to overcoming program and community challenges.