By Khaliah A. Johnson, MD (Attending Physician, Pediatric Palliative Care, Children’s Healthcare of Atlanta, USA)
Featured Article: Lindley, L. C. & Newnam, K. M. (2017), ‘Hospice Use for Infants With Life-Threatening Health Conditions, 2007 to 2010‘, J Pediatr Health Care 31(1), 96–103.
Other Feature Article: Brock, K. E. & Mullaney, E. (2018), ‘High-risk communication at the time of hospice enrollment: Standardizing pediatric hospital to hospice sign out‘, Pediatr Blood Cancer
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In reviewing the list of citations for the month of February, I was most struck by the breadth of work examining the experiences of children and families facing life-limiting, life-threatening illness across the age and disease spectrum. Palliative care experts note how important it is for services to be introduced upon diagnosis and to ideally continue throughout the disease trajectory. However, I believe we might actually be at the cusp of research reflecting what we have intuitively and anecdotally known to be true about the impact of our work. As we find increasing evidence for the value of palliative care in all pediatric age groups with a multitude of diagnoses and disorders, we must continue to examine ways to ensure that high-quality, comprehensive palliative care can be delivered to diverse populations, in a variety of practice settings.
To this end, there is growing emphasis on the importance of and need for community-based palliative care. I believe this need is particularly true for children with life-threatening illness; children’s growth, development, and overall well-being are integrally linked to their experience of community. In turn, how they navigate through illness and attain quality of life cannot be separated from what happens at home, at school, and in other supportive community-based settings (such as church or even the primary pediatrician’s office). In the last 5 years I have spent at Children’s Healthcare of Atlanta (CHOA), I have worked with colleagues throughout the state to explore the role of hospice and other community-based services in supporting children and families with life-threatening illness. Collaborative efforts between our inpatient palliative care team at CHOA and independent hospice organizations has allowed for improved continuity of care from hospital to home, increased confidence amongst hospice providers in caring for children, and improvement of state-wide policies and procedures around access to hospice care for children and families despite their treatment preferences. While we have clearly seen the benefits of partnering with hospice in our practice setting, the articles published by LC Lindley and KM Newman, and K Brock and E Mullaney remind me of gaps that still exist in ensuring for optimal utilization of pediatric hospice care.
In their study, Lindley and Newnam used a conceptual framework to examine the association between infant and family factors and use of hospice services in California Medicaid patients between 2007 and 2010. They found that of all infants who died during that time frame, 15% were enrolled in hospice services (with an average length of stay of 5 days) despite approximately 80% having access to hospice within their geographic region. In turn, infants with congenital anomalies were more likely to use hospice services than infants with cardiovascular or respiratory conditions, which might suggest a bias in referrals made from hospital to community hospice. This study highlights the importance of pursuing research to understand clinicians’ referral practices and factors that impact families’ receptivity to hospice.
Brock and Mullaney highlight the importance of stream-lined communication and collaborative care in supporting pediatric oncology patients referred into hospice services from the hospital setting. Their proposal of a check-list based approach to sign-out can assist inpatient providers in thinking through the practical medical and psychosocial elements of the home care plan and support hospices in understanding the intricate details of care that often link back to patients’ medical homes within oncology. Brock and Mullaney’s commentary is a poignant reminder that exceptional comprehensive care of patients with serious, complex illness does not exist within a silo. We should all be thoughtful of strategies that can be leveraged to improve continuity of care for this fragile population.
I look forward to the day when every child and family has access to high quality hospice and palliative care, wherever they are. In the meantime, I remain thankful that “we ‘re on the cusp, on the brink of enormous change.”