1. Bettini, Liz MSN, APRN, PCNS

Article Content

On March 23, 2010, President Barack Obama signed the Patient Protection and Affordable Care Act (PPACA) into law. This legislation contained a new provision, Section 2302, the Concurrent Care for Children Requirement (CCCR), which allows children under the age of 21 years to receive hospice services along with curative or life-prolonging treatment (PPACA, 2010). As part of this provision, children that qualify for hospice due to a prognosis of 6 months or less are eligible to have both hospice as well as supplemental community waiver services, such as skilled nursing care (PPACA, 2010). This gives the parents of children with life-limiting illness that have high-technology needs, such as ventilator assistance, the opportunity to have both hospice and skilled bedside nursing care in the home.


Case Report

Jessica is a 17-year-old female patient with Louis-Bar syndrome who was hospitalized 3 months ago due to pneumonia and progressive respiratory failure leading to tracheostomy placement and full-time ventilator support. Due to increasingly poor blood gas values and multiple pneumothoraxes, her medical team reports little hope for recovery, and a poor prognosis. Jessica and her parents decided to leave the hospital to spend her remaining time at home with friends and family. She was discharged home with hospice services that include nursing, physicians, social work, and volunteers that offer the family 24-hour support when needed. Under CCCR, Jessica and her family also received 16 hours of daily skilled nursing care based on her technology needs deemed necessary by her state's technology waiver. Jessica died at home 1 month after her discharge from the hospital. In that time, she celebrated her 18th birthday surrounded by her family and friends. Her parents said they felt well supported by the hospice and home care teams. Since Jessica was enrolled in hospice, her parents have been offered much needed psychological support and bereavement services for 14 months following Jessica's death.


Before CCCR, the parents of children like Jessica would have had to choose between home nursing care and hospice services. Since patients with high-technology demands require 24-hour care, parents needed the bedside nursing to safely care for their children at home. But since the 24-hour support offered by hospice was not in place, children with life-limiting disease often went back to the hospital multiple times for symptoms that could have been managed in the home.


The legislation has proven to serve two purposes in caring for these special needs patients: to keep children with terminal illnesses in the comfort of their homes while still supplying appropriate care and symptom management, and to lower state healthcare costs by limiting expensive and unnecessary hospital stays.


Even though the PPACA was signed into law more than 2 years ago, many pediatric hospital discharge planners and hospice administrators are not aware of these provisions allowing for concurrent services for children. This often causes much confusion and debate among health professionals when a child with a poor prognosis leaves the hospital, many times without hospice services offered to the family. The lack of hospice support often delays discharge as the hospital team tries to piece together home services equipped to manage these complicated cases. Hopefully, as more information is presented to home care, hospice, and pediatric clinicians, we will see an increase in children offered concurrent services. After all, hospice is not only meant for the "moms and dads" that benefit from our services, but for the "sons and daughters" and their parents who require even greater support when dealing with life-limiting illness and end-of-life-care issues.


For more information and to download the Concurrent Care for Children Requirement Implementation Toolkit, visit the National Hospice and Palliative Care Organization Website (NHPCO) at:


Guided Care Provides Better Quality of Care for Chronically Ill Older Adults: Patients Also Use Less Home Care Services

Patients who received guided care, a comprehensive form of primary care for older adults with chronic health problems, rated the quality of their care much higher than patients in regular primary care and used less home care, according to a study by researchers at Johns Hopkins University. In an article published online by the Journal of General Internal Medicine, researchers found that in a 32-month randomized controlled trial, guided care patients rated the quality of their care significantly higher than those in normal care, and were 66% more likely to rate their access to telephone advice as excellent or very good. Patients also had 29% fewer home healthcare visits.


"As more practices move to a comprehensive care model, guided care's team care approach can help ensure better quality care and more satisfied patients," said Bruce Leff, MD, coinvestigator of the study and professor with the Johns Hopkins School of Medicine and Johns Hopkins Bloomberg School of Public Health. "In addition, the nearly one third reduction in home care use highlights how providing comprehensive care for high-risk patients can reduce health service utilization."


According to the study, guided care patients also experienced, on average, 13% fewer hospital readmissions and 26% fewer days in skilled nursing facilities. However, only the difference in home healthcare episodes is statistically significant. In earlier reports, physician satisfaction was higher and family caregiver strain was lower with guided care.


Guided care is a model of proactive, comprehensive health care that can help primary care practices transform into patient-centered medical homes. Guided care focuses on improving care for patients with multiple chronic health conditions. Guided care teams include a registered nurse, two to five physicians, and other members of the office staff who work together to perform home-based assessments, create an evidence-based care guide and action plan, monitor and coach the patient monthly, coordinate the efforts of all the patient's healthcare providers, smooth transitions between sites of care, promote patient self-management, educate and support family caregivers, and facilitate access to community resources.




Patient Protection and Affordable Care Act (PPACA), Pub. L. No. 111-148, [S]2302, 124 Stat. 119, 175-176. (2010). Retrieved from