Palliative care programs
Rita Agarwal MD and Myron Yaster MD
“In this world, nothing is certain except death and taxes”. Benjamin Franklin
“If this is true, the one thing we can really hope for is a good death for ourselves and those we love.” Rita Agarwal
Over the past 10 days I’ve been thinking a lot about death and the fleeting nature of life. Last week, was the Jewish high holiday of Yom Kippur in which reflection, prayer, repentance and remembrance of family members and friends who have passed away are the central themes of this most holy of days. Perhaps not surprisingly and adding to my thoughts of life and death, just before going to services, I worked with Dabe Chatterjee (and Kim Battle) to complete the annual “In Memoriam” for the upcoming SPA annual meeting to be held in New Orleans this week (and if you haven’t registered, what are you waiting for? Go to the SPA website to do it today https://www2.pedsanesthesia.org/forms/registration/2022annual_register.iphtml!). We lost quite a few of our friends, colleagues and mentors last year making today’s PAAD so much closer to home to me.
If Rita is right, than end of life pain and symptom management, palliative care, should be important to all of us and our patients. But is it? As you will learn in today’s PAAD, about 20% of pediatric hospitals lack Pediatric Palliative Care Services (PPC). Why? The primary determinant is hospital financial health or in the words of Jerry McGuire “show me the money”! Myron Yaster MD
Original article
Meaghann S Weaver, Valerie K Shostrom, Erica C Kaye, Amy Keegan, Lisa C Lindley. Palliative Care Programs in Children's Hospitals. Pediatrics. 2022 Oct 1;150(4):e2022057872. doi: 10.1542/peds.2022-057872. PMID: 36093621
Editorial
Humphrey L. The Have and Have Nots: Characteristics of Hospitals With a Pediatric Palliative Care Program. Pediatrics. 2022 Oct 1;150(4):e2022058233. doi: 10.1542/peds.2022-058233. PMID: 36093618
Pediatric palliative care (PPC) is a board-certified subspecialty that provides expert medical management to patients with serious illness. PPC improves pain and nonpain symptoms, optimizes communication and goal concordant care, and improves patients’ quality of life.[1, 2] Previous studies/reports of PPC presence and program function have largely relied on self-reported registries by PPC program members.[3] Today’s article by Weaver et al. is novel because it used The Children’s Hospital Association Annual Benchmark Report to examine PPC program prevalence and the characteristics of hospitals supporting these programs.
Cutting to the chase, 20% of children’s hospital lacked access to PPC services even though access to PPC is a key criterion in the US News and World report ranking of children’s hospitals. Weaver et al found that “larger hospitals with higher acuity are more likely to have PPC programs. Hospitals with pediatric-friendly home hospices and/or respite care in their community are more likely to have a PPC program. Results also highlight that hospitals with Joint Commission accreditation or Magnet Nursing Designation, Accreditation Council for Graduate Medical Education training programs, or an Accountable Care Organization are statistically more likely to have a PPC program.”[2]
“Hospital financial health was the key factor why 20% of pediatric hospitals do not have a PPC program. Hospital size, visit volumes, patient acuity, and possessing an Accountable Care Organization are all drivers of a hospital’s financial health. Additionally, these (well financed) hospitals can and do support the costly endeavor of staffing, training, and maintaining Magnet Nursing Designation, Joint Commission accreditation, and Accreditation Council for Graduate Medical Education training programs. They also support a PPC program, which typically cannot cover its operational costs, let alone generate revenue because of how reimbursement structures currently exist. PPC program existence and growth require operational and philanthropic financial support.”[1, 2]
Interestingly, accreditation by the Joint Commission DID NOT correlate with PPC. Finally, all the institutions that qualified as federally qualified health centers (FQHC-safety net institutions) provided PPC services. Thus, the real finding of this article is that health care disparity remains a feature of the American health care system and is a call to action to “ensure all hospitals can afford PPC programming. We also need national requirements on the presence and staffing requirements of PPC within hospitals to give health systems a reason to accept the costs of supporting a PPC program. Only then will the thousands of children in need of PPC have access to it.”[1, 2]
Finally, this article only looked at the presence or absence of a PPC within a children’s hospital. There was nothing about what servicers were provided nor by whom. Do the programs achieve or reach national quality or staffing benchmarks? Are all patients covered or only oncology patients? We suspect that many hospital’s report the presence of these programs for the purpose of meeting US News and World Report benchmarks but do so with just bare bone staffing and financial support. Tell us about your experiences with PPC… We’d love to hear from you.
References:
1. Humphrey, L., The Have and Have Nots: Characteristics of Hospitals With a Pediatric Palliative Care Program. Pediatrics, 2022. 150(4).
2. Weaver, M.S., et al., Palliative Care Programs in Children's Hospitals. Pediatrics, 2022. 150(4).
3. Rogers, M.M., et al., Pediatric Palliative Care Programs in US Hospitals. Pediatrics, 2021. 148(1).