Policy Advocacy to Advance Pediatric Palliative Care; A Call for Action

Review Article

Ann Nurs Res Pract.2016; 1(1): 1001.

Policy Advocacy to Advance Pediatric Palliative Care; A Call for Action

Bressler T*

Department of Nursing, Maimonides Medical Center, USA

*Corresponding author: Bressler Toby, Director of Nursing for Professional Practice, Maimonides Medical Center, 4802 Tenth Avenue, Brooklyn, NY 11219, USA

Received: April 10, 2016; Accepted: May 27, 2016; Published: May 30, 2016


Approximately 55,000 pediatric deaths occur annually in the United States. Estimates suggest that more than half of all pediatric deaths occur in a hospital. Within hospitals most of those deaths happen in a critical care unit, such as the pediatric intensive care unit or the neonatal intensive care unit. The death of a child will never be easy to accept or manage. Healthcare professionals, policy makers and all advocates for children can and must do more to integrate palliative care for any child living with a life limiting illness.

Keywords: Pediatrics; Palliative care; Policy; Children living with life limiting illness; Pediatric critical care


According to the Centers for Disease Control and Prevention there are approximately more than 2 million children living with a life threatening illness in the United States (www.cdc.gov). The medical care of terminally ill and incurable children creates tremendous stress and financial burden, on an already taxed system [1]. The goal of improving pediatric palliative care services is to increase funding to educate and support pediatric palliative care services for any child with a life threatening illness thus ensuring that pediatric patients and their family’s healthcare needs are given the attention and priority they deserve.

In the United States, key stakeholders, including state and federal policy makers have an obligation to make fiscally prudent decisions regarding healthcare spending and be committed to the imperative to spend our dollars wisely. Many times the attention and allocation of resources does not reach our most vulnerable and smallest of patients, our children. Enhancing and increasing pediatric palliative care services can serve a dual role of providing compassionate care and improving quality of life for children with an incurable illness, honoring their childhood while relieving an overtaxed healthcare system redirecting resource allocation.

Pediatric patients living with a life limiting or terminal illness, who would benefit from palliative care services die a prolonged death in hospital settings or more specifically in intensive care settings [2,3]. Daily costs of intensive care approximately ranges from $2,000- $3,000 per patient per day in the United States (www.cms.gov/). The average pediatric intensive care unit contains 25 beds, what’s more, pediatric intensive care units are expensive to build and staff, so adding extra intensive care unit beds represents an enormous cost burden for the consumer of healthcare and the public. Because bed shortages jeopardize both quality patient care and access to intensive care it is essential that we examine methods to foster both quality patient care and development of pediatric palliative care programs.

The Affordable Care Act and other policy changes have created an environment of rapidly evolving models of healthcare. As palliative care responds to these changes, research and funding must be directed to enhance the care environment to support our pediatric patients living with a life limiting illness in need of palliative care. The Children’s Project on Palliative / Hospice Services (Chipps) defines pediatric palliative care as a philosophy of care delivery to children living with life-threatening illness or life limiting conditions and their families. Improving pediatric palliative care services and access to care remains an elusive legislative goal and surprisingly the past several years have been lacking in enacting legislation to support pediatric palliative care. There is a growing need to change the restrictive Medicaid hospice regulations in order to open access to hospice and palliative care services for children. Furthermore, Pediatric palliative care legislation has been absorbed within Maternal Child Health services thus reducing the exposure and minimizing the publicity of the issue.

Scope and Severity

The current healthcare system tends to fail pediatric palliative care patients and the experience of pediatric patients and their families can be variable. This vulnerable population, children and their families are left to make meaning of their experience in a system that is designed to cure [4]. This is especially true for terminally ill children who have an incurable disease and for whom no cure is possible.

Approximately 22,000 incurably ill children are not well-served by a system intended to cure as opposed to improve the quality of life of these children. The lack of adequate provision for incurably ill children harms them, their families, and society. Evidence widely indicates that incurably ill pediatric patients are not dying at home or in the comfort of a hospice setting; rather they are more likely to die in the high tech arena of an intensive care unit or an inpatient hospital unit [5]. More than 2.4 million deaths are recorded yearly in the United States. Most of these deaths, close to 80% occur in hospital settings, where one-fifth of Intensive Care Unit (ICU) patients die [6]. Incurably ill children dying at home or in a palliative care setting may alleviate the issue of intensive care bed shortages that many hospitals have. The availability of intensive care beds would benefit the public health, safety and well-being of communities who can at times be forced to travel in emergent situations for symptom management to distant locales for lack of intensive care availability.

A process of action, with details is described and defined in (Table 2).

Many times the healthcare system fails many of these vulnerable patients and families leaving them feeling isolated and overwhelmed and at times the repercussions of their child’s illness affect the family for many years. In a recent article in Pediatric Annals the mention of support for these families at the onset of a diagnosis of a life threatening disease, medical crisis, or after the death of a child is inadequate; furthermore the healthcare professionals who do this sacred work have minimal or no support [7]. Conflicting treatment goals, challenging conversations and ongoing exposure to a family in crisis in tandem while honoring families’ wishes can be daunting.

Problem Statement

The American Academy of Pediatrics has a published policy statement on Palliative care for Children. In 2008 three states passed the ChiPACC Act (H.R. 6931), The Children’s Project on Palliative Care / Hospice, Massachusetts, Colorado and Florida. Towards the end of 2008, California passed the pediatric palliative care waiver that ensures children with life threatening illness have access to comprehensive palliative care. Unfortunately over the course of the past several years there have been multiple attempts at proposing legislation related to improving pediatric palliative care however they have not been passed nor reintroduced at this time. Federal support is needed to improve access to palliative care service to children who may benefit from these important programs. Pediatric palliative care legislation has been absorbed within Maternal Child Health services thus reducing the exposure and minimizing the publicity of the issue. Understandably in the current economic climate where budgetary issues are paramount to the fiscal success of our nation, the need to cut costs is justifiable. This proposal of enhancing the palliative care services of pediatric patients is an opportunity to support quality patient care outcomes while correlating a positive financial impact.

Some of the model legislation that the above mentioned three states have passed has addressed access to pediatric palliative care issues as well as increasing public awareness to palliative care and its available pediatric programs. For example, Florida currently has in place a section 1915(b) waiver covering children’s hospice services. Colorado’s section 1915(c) waiver was recently approved by the Centers for Medicare and Medicaid (CMS). Massachusetts Health Reform Law of 2006 included a pediatric initiative with a one-time $800,000 appropriation to pay for hospice services to children. Furthermore, the Department of Public Health of Massachusetts recently selected ten hospices to receive $55,000 in funding to train develop and implement integrated palliative care programs. Most recently New York State has passes a mandate that allows children with a life threatening incurable illness with a prognosis of mortality within the year to be accepted into a palliative care program. This is a paradigm shift from the previous prognosis of less than six months of years past. This is wonderful news for these children and their families; however we still have a ways to go to move this agenda for our most vulnerable children forward.

In a 2005 press release, Health and Human Services Secretary Mr. Leavitt expressed commitment to assist states interested in waiving hospice regulations. The federal regulations in place at times prevent families from accessing palliative care services for their children with incurable illness, including hardships for families, by unnecessary admissions to emergency rooms or intensive care units leading to duplicity of medical tests and services.

Additional support is needed from federal legislators to facilitate concurrent reimbursement for integrated palliative care programs would allow for better coordination and continuity of care, reducing emergency room visits, shorten or decrease intensive care unit visits and prevent duplicative tests and exams. It is time to capitalize on the growing momentum to change restrictive Medicaid hospice regulations.

The goal of pediatric palliative care legislation is to ensure adequate palliative care services is rendered to pediatric patients while ensuring that appropriate education for clinicians while encouraging service in this specific practice area in order to meet patient care and service demands. More specifically there are several relatively simple steps to take to improve quality of pediatric palliative care while incorporating this into legislation; defined in (Table 1)

Citation: Bressler T. Policy Advocacy to Advance Pediatric Palliative Care; A Call for Action. Ann Nurs Res Pract. 2016; 1(1): 1001. ISSN:2572-9403