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Ryan A. Walsh

Abstracted from: Ryan A. Walsh, A Matter of Life, Death, and Children: The Patient Protection and Affordable Care Act Section 2302 and a Shifting Legal Paradigm, 86 Southern California Law Review 1119 (July, 2013) (Student Note) (309 Footnotes)

Don't give up the fight, life is your right.

--Bob Marley (mantra adopted by Nick Snow, former pediatric hospice patient)Nick Snow was diagnosed with neuroblastoma, a rare and deadly form of cancer, at the age of six.  After undergoing “chemotherapies, surgeries, four types of radiation, a bone marrow transplant and many experimental therapies,” Nick saw his cancer finally go into remission six years after diagnosis.  Twice during this grueling ordeal, doctors told Nick that he would soon die and enrolled him in a hospice program.  Unexpectedly, Nick's general health improved during hospice treatment, enabling him to resume the fight against his cancer.  Under then-existing federal laws, Nick's improved health and decision to seek a long-term cure simultaneously rendered him ineligible for hospice services. As this Note discusses and as Nick Snow explained in his own words, this legally mandated result is unsatisfactory:

It seems kind of strange that [hospice] would only come when I was dying and not when my family and I really needed it most, like when I was going through all the hard (chemotherapy) treatment . . . . But when I decided that I felt better enough to try a new treatment, hospice couldn't come anymore. That was hard on all of us--to lose support just because I wanted to try to live. 

Motivated by his personal experience, Nick Snow lobbied the United States Congress and the California State Assembly to change the law so that children could access hospice services at an earlier point in their illnesses.  Nearly three years after Nick first advocated reform of the laws governing hospice, California passed a statute and received a Medicaid waiver authorizing a program designed to expand pediatric end-of-life services.  Another four years passed before Congress adopted a similar *1121 proposal at the federal level--the subject of this Note.  Sadly, Nick Snow passed away before either of these measures took effect.

Nick Snow's tragic story is, unfortunately, not the only one of its kind. However, the recent extensive and sometimes rancorous debate over the Patient Protection and Affordable Care Act of 2010 (“ACA”) has largely ignored a section of the Act that could greatly alter the care of an important, yet invisible, population--terminally ill children, like Nick Snow. Section 2302 of the ACA dramatically revises the structure in which end-of-life care and hospice services are delivered to Medicaid-eligible children.  Although other portions of the ACA received much publicity for their incidental effects on end-of-life issues, Section 2302, which actually alters medical services for seriously ill children, received little attention, especially within the legal community.  Section 2302 generally expands hospice services for Medicaid-eligible children,  yet leaves untouched much of the complex legal and regulatory environment governing pediatric end-of-life care. Understanding the tension between that which the ACA changes and that which it ignores is of critical importance to developing a legal framework that better cares for society's seriously ill children.

This Note carefully studies the ACA-driven shift in the legal landscape governing pediatric hospice care, projects the likely effects of the new law, and recommends a modified approach.

Part II introduces and explains the legal paradigm which has traditionally governed federally funded care at the end of life. That section also explicates the hospice concept as well as the related Medicaid statutory provisions.

Part III explores the history of Section 2302, argues that it represents a substantial shift in the end-of-life legal paradigm, and predicts the effects of the new *1122 law.

Part IV presents a critique of this new law, identifies several states' efforts in addressing the failure, and offers a new model for the Medicaid legal landscape governing pediatric end-of-life care.

Part V concludes that Section 2302, while a substantial change in the legal framework for children's Medicaid, leaves untouched an important barrier to palliative care for children, namely the six-month prognosis-of-death requirement; this requirement will need to be reshaped if terminally ill children are to enjoy timely access to hospice services.

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