Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

[Citation: Rushton, CH. Pediatric Palliative Care: Coming of Age. Innovations in End-of-Life Care, 2000;2(2), www.edc.org/lastacts]

Palliative care for adults is becoming an accepted standard of care. Following the SUPPORT study, the issues surrounding end-of-life care became highly visible and palliative care as a specialty became recognized.¹ Despite this, the realities of dying children and their families remain nearly invisible. This issue of Innovations focuses on pioneering work to improve the care of dying children and their families.

Worldwide an estimated seven million children and their families could benefit from hospice and many more from palliative care. In the U.S. alone, one million children are very seriously ill. Each year in America 75-100,000 children die; one-third of these deaths are from conditions known to be life-threatening. In the U.S. the largest percentage of children die in institutions, primarily hospitals. Of hospital deaths the majority occur in critical care settings. Sadly less than one percent of children needing hospice receive it in the United States.² Fortunately, this is not the case across the globe. In England, for example, there are now about 20 pediatric hospices serving the unique needs of children and their families for clinical care, psychosocial and spiritual support, respite and bereavement.

The barriers to good pediatric palliative care are many and diverse. There are clinical, educational, institutional, regulatory, financial, and attitudinal barriers. A prominent barrier is a cultural denial of the fact that children do die. The inevitability of death in childhood should invite humane and compassionate responses rather than the stark denial of its existence. However, the injustice of death in childhood instigates deep emotional responses that often lead to behaviors that reinforce the denial and prohibit productive dialogue and action.

In healthcare settings, the denial and avoidance of death are reinforced because treatment decisions for children with life-limiting conditions are often fraught with uncertainty, ambiguity and conflict. No one wants to give up too soon when a child’s life is in the balance. The uncertainty surrounding their care often propels parents and health care professionals to tolerate heavy burdens in exchange for what may be a slim chance that the child may live a little longer. Research published recently in the New England Journal of Medicine found that children receive aggressive care designed to treat their cancer, even when the disease is considered incurable. As a result, the vast majority of the children studied had suffered greatly from at least one symptom before they died. More than half were found to have struggled with at least three symptoms, such as fatigue, dyspnea, or nausea. Pain was also common, but pain treatment brought relief to only about one-quarter of the patients.³

These deficiencies can be explained in part by a lack of standards for pediatric palliative care. Standards for pediatric palliative care are now becoming a worldwide priority. Children’s Hospice International’s standards for pediatric hospice and the Elements of Family-Centered Care promulgated by the Association for the Care of Children’s Health have provided an important foundation for developing standards for pediatric palliative care.^4,5 But there is much more to be done. The ChIPPS program (The Children’s International Project on Palliative/Hospice Services), described in the International Perspectives department of this issue, is an attempt to bring together existing clinical and scientific knowledge about various dimensions of pediatric palliative care and to establish international standards. Dr. Levetown and her colleagues are providing the needed leadership to establish mechanisms to develop international standards of palliative care for children with life-threatening conditions.

Standards alone will be insufficient to radically change the culture surrounding pediatric end-of-life care. Attention to the attitudes and beliefs of pediatric health care professionals caring for children with life-threatening conditions is an important first step in devising meaningful interventions.⁶ Innovative strategies to enhance health care professionals' knowledge and skill in clinical palliative care, ethics, law, and communication will be necessary to assure an adequate foundation for delivering care.

In the United States, regulatory, financial, and service delivery system issues converge to create monumental barriers to palliative and end-of-life care. Regulatory barriers arise from the limitations that hospice regulations place on eligibility for services. Specifically, the six-month time frame for terminal illness is problematic in children because the trajectory to death is often unpredictable. As a result, referrals are often made when the child is imminently dying rather than earlier when there is greater potential for positive impact for the child and family. These regulations also have financial implications for families who could benefit from essential palliative care and end-of-life services, which are not currently reimbursed. Moreover, systems of care for children with life-threatening conditions are often fragmented and lack coordination.

Pediatric palliative care programs can best meet the needs of children and families by integrating all aspects of care within unified goals, and offering interdisciplinary, holistic services. Ideal models of care for pediatric palliative care will shift the focus away from a rigid demarcation between aggressive and palliative care and honor the synergy that can exist between them. Dr. Ann Goldman’s work in Great Britain (see the Featured Innovation in this issue) provides an important model for pediatric oncology that can be translated to other settings and systems. In contrast to prevailing practice in the U.S., Dr. Goldman’s program, based within a pediatric hematology-oncology department, fully integrates palliative care from the time of diagnosis throughout the disease trajectory, to manage symptoms and provide a range of supportive services in coordination with local care providers after the child is discharged from the hospital. Although, the organization of the health system in the U.K. is quite different from the U.S. system, this model points to the need for better coordination of services across the continuum of care.

There is a tremendous opportunity for tertiary pediatric institutions to join with their communities to change the culture surrounding the care of children with life-threatening conditions and to develop systems that make the continuum of care seamless. In the United States, the debate about designating in-patient palliative care units and establishing pediatric hospices versus total integration of those services into existing tertiary care and community systems continues. Innovative models for delivering pediatric palliative care must be developed. Congress has taken an important first step to support the need for pediatric palliative care services. In December 1999, lawmakers approved a $1 million appropriation for demonstration model programs to address the unique needs of children with life-threatening conditions. The Program for All-Inclusive Care for Children and Their Families (PACC) is a start in providing tangible evidence of how children’s hospice is making a difference

Funding for pediatric palliative care services is a tremendous challenge worldwide. The charity model for funding pediatric hospices in the U.K has been extraordinarily successful and provides a useful framework for considering how to provide the needed palliative care and end-of life services in an era of shrinking human and fiscal resources.

The trend in pediatric palliative care to cast the net more broadly means that children with any type of life-threatening condition could benefit from the philosophy and holistic practices throughout the disease process. Anticipating end-of-life and palliative care needs for children with life-threatening conditions would add an important dimension of advance care planning to routine medical care When combined with respite services, hospices for children and their families can provide an important option for palliative and end-of-life care and a larger safety net throughout the disease process.

Pediatric palliative care is finally coming of age. The convergence of many national and international forces are propelling individuals, institutions, communities, and funders to embrace the opportunity to improve care for all children with life-threatening conditions. This issue of Innovations highlights some key initiatives around the globe that will result in improvements in care for our most vulnerable—children.

Post a Comment

References

1. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). A controlled trial to improve care for seriously ill hospitalized patients. Journal of the American Medical Association. 1995;274:1591-1597.
[Return to Editorial]

2. Children's Hospice International, 1999.
[Return to Editorial]

3. Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Slaem-Schatz S, Emanuel EJ, Weeks JC. Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine. 2000;342:326-333.
[Return to Editorial]

4. Children's Hospice International. Standards of hospice care for children. Pediatric Nursing. 1993;19(3):242-243.
[Return to Editorial]

5. Johnson BH, Jeppson ES, Redburn L. Caring for Children and Families: Guidelines for Hospitals. Bethesda, MD: Association for the Care of Children's Health, 1992.
[Return to Editorial]

6. An ongoing research study in the United States, based at Education Development Center, Inc. in Newton, MA and funded by The Nathan Cummings Foundation is surveying clinicians' attitudes, knowledge and self-reported practice in pediatric palliative care at seven hospitals and interviewing clinicians and surviving parents of children who were treated at three of these institutions. For a longer description of "Enhancing Family-Centered Care for Children Living with a Life-Threatening Conditions," please visit the Center for Applied Ethics and Professional Practice website at http://www.edc.org/CAE/caeprjov.html.
[Return to Editorial]

[Go to Featured Innovation]
[Go to International Perspectives]