Literature Review

Detroit teen’s cancer death sparks 5K walk and new Georgia diploma law hoodline, Detroit, MI; by Jerry McAllister; 8/16/26 A Detroit family walked the riverfront near their old neighborhood this week to honor a 15-year-old whose fight with a rare bone cancer ended in his death nearly two years ago but has since reshaped state law hundreds of miles away in Georgia. GaKobe Milton, who once lived in Detroit before his family relocated to Atlanta, was diagnosed with osteosarcoma at age 13 in 2022 and died on December 10, 2024, after a two-year battle with the disease. His mother, Kuleesha Milton, brought his memory back to the city he called home with a 5K walk at Alfred Brush Ford Park along the Detroit Riverfront. ... Georgia lawmakers signed the GaKobe Milton Act into law in his honor, and Governor Brian Kemp signed House Bill 1284 on May 5, according to the Georgia General Assembly. The law requires local school boards to petition the State Board of Education within 14 days for graduation requirement waivers, allowing schools to award diplomas to terminally ill students receiving end-of-life care, or posthumously if necessary. The act waives completion of all remaining high school graduation requirements for eligible terminally ill students.

Safeguarding palliative and serious illness care in America The Lancet Regional Health - Americas; by William E. Rosa, Gina Piscitello, Diane E. Meier, Arif H. Kamal, Jean S. Kutner, Abby R. Rosenberg, Allison Silvers, Stacie Sinclair, Robert M. Arnold; August 2026If a society's greatness is measured by how it treats its most vulnerable, we live in discouraging times for the more than 13 million adults and 700,000 children with serious illnesses in the United States of America (U.S.). ... In this personal view, we describe three threats to specialty palliative care in the U.S., namely healthcare financing changes, increased privatization of services, and low prioritization of palliative care research in myriad contexts, including pharmaceutical and clinical trial research and development. We subsequently provide guidance for multi-sector actors to address these threats and mitigate harms while optimizing palliative care for U.S. populations.

[Canada] Listening to young people on childhood death: a youth-focused participatory approach to children's palliative and end-of-life research and policymaking Children & Society; by Sydney Campbell, Nika Rovensky, Ryan Kent, Lauren Delaney, Franco A. Carnevale, Mary Ellen Macdonald; 6/23/26 Conclusion: Our study is one of the first to investigate the perspectives of young people in Canada regarding children's palliative and end-of-life (P-EOL) care, and the first in Canada to employ a participatory approach with young people in research about childhood death and dying. ... To date, the lessons we have learned can help researchers from diverse contexts aiming to carry out similar projects related to children's P-EOL care, based in the belief that the only way to truly shift current practices that overlook young people's voices and engagements as meaningful is through continuous advocacy, development, and application of engagement practices in all matters affecting young people.

Public Policy Agenda & Toolkit National Coalition for Hospice and Palliative Care; Press Release; 5/4/26 The National Coalition for Hospice and Palliative Care’s Public Policy Agenda outlines a unified, consensus-driven set of priorities to strengthen palliative care and hospice for patients, families, and caregivers across the lifespan. Developed through collaboration among national member organizations, the agenda provides a coordinated framework to guide policy and advocacy efforts at both the national and state levels. It reflects shared priorities to improve access, advance quality and equity, support the workforce, and promote sustainable, value-based care.

H.R.9703 - Improving access to transfusion care for hospice patients act of 2026 U.S. Congress.gov, House Ways and Means Committee; sponsored by Rep. Debbie Dingell (D-MI-6); bill introduced 7/15/26 H.R. 9703: To require the Center for Medicare and Medicaid Innovation to test allowing blood transfusions to be paid separately from the Medicare hospice all-inclusive per diem payment.

Reynolds creates Iowa Medicaid fraud task force Insurance Newsnet; by Marissa Payne; 7/9/26 Gov. Kim Reynolds signed an executive order Wednesday [7/8] creating a new task force geared toward eliminating Medicaid fraud, waste and abuse, joining in the federal government's crackdown on potential misuse of public assistance programs. Reynolds signed the order establishing the Iowa Medicaid Fraud Elimination Task Force, which the Republican governor's office says will seek to ensure funds are used to support Iowans who qualify for benefits. "Safeguarding federal programs like Medicaid from bad actors requires accountability at every point in the process, from member eligibility verification to provider enrollment and billing," Reynolds said in a statement. 

A smarter approach to fraud means better care at home The Hill | Opinion; by Rep. Beth Van Duyne (R-Texas) and Jennifer Sheets; 6/23/26 .. Home health and hospice providers meet people where they are — both physically and through wraparound support — caring for them in their homes at the end of life or during critical healing and recovery periods when trust is paramount. ... Fraudulent operators do not simply steal taxpayer dollars; they harm real people, exploit vulnerable individuals, undermine legitimate providers, and erode confidence in critical healthcare services that families depend on every day. Combatting fraud, waste and abuse in healthcare must remain a national priority. That is why I am glad to partner with the National Alliance for Care at Home on the Protecting Seniors and Stopping Fraudsters Act, designed to strengthen program integrity in home health and hospice while protecting access to care for patients who depend on these services, and reducing burden for legitimate providers.

Dying patients shouldn’t have to choose between dia­lysis care and com­fort The Boston Globe, Boston, MA; by Patricia Ramsden; 6/22/26 ... Medi­care cur­rently requires most end-stage kid­ney fail­ure patients to choose between dia­lysis and hos­pice bene­fits. ... People dying from other ter­minal ill­nesses do not face this harsh choice. For sev­eral years, Dia­lysis Clinic, Inc. (DCI), the only national not-for-profit dia­lysis organ­iz­a­tion, has col­lab­or­ated with not-for-profit hos­pice organ­iz­a­tions to offer con­cur­rent pal­li­at­ive dia­lysis and hos­pice care to selec­ted patients in Ten­nessee and West­ern Pennsylvania. A 2026 col­lab­or­a­tion between DCI and Care Dimen­sions, the largest hos­pice pro­vider in the state, expan­ded that model to East­ern Mas­sachu­setts. However, this innov­at­ive pro­gram, rely­ing on phil­an­thropic fund­ing, remains avail­able only to a few patients.

1776-1786: 250 Years - A History of CareHospice & Palliative Care Today; by Joy Berger; for 6/10/26Continental Congress, Declaration of Independence, July 4, 1776

Neal, Sánchez release new GAO report finding the cecessity of Sánchez’s Hospice CARE Act U.S. Ways & Means Committee - Ranking Member Richard E. Neal, Washington, DC; Press Release; 6/9/26Ways and Means Committee Ranking Member Richard E. Neal (D-MA) and Ways and Means Trade Subcommittee Ranking Member Linda T. Sánchez (D-CA) today [6/9/26] highlighted a new report from the nonpartisan U.S. Government Accountability Office (GAO) finding that Congress must reform the Medicare hospice benefit to address misaligned payment incentives, reduce excessive spending, and root out fraudsters. Neal requested this report back in May 2023, and Sánchez leads legislation to modernize the Medicare hospice benefit while also safeguarding against fraud. ...Editor's Note: For a more comprehensive understanding and response, examine The full GAO report and the National Alliance for Care at Home responds to GAO report regarding Medicare hospice payment. 

Pennsylvania General Assembly House Bill 2254 - Medical Marijuana ActPennsylvania General Assembly | House Committee Vote Summary 2025-2026 Regular SEssion; 6/1/26 Requires healthcare facilities to permit terminally ill patients to use medical marijuana. 

New Iowa law allows ‘adult close friend’ to make end-of-life medical decisions KCRG-9 ABC, Iowa City, IA; by Lacey Reeves; 5/28/26 Starting in July, a close adult friend can make end-of-life medical decisions for someone who is unable to make them themselves under a new Iowa state law. When a patient can’t make medical decisions for themselves, a hierarchy establishes who can make the decisions for them. Typically a spouse, adult child or adult sibling of the patient can make those decisions. “Not everybody has a family member who is available, willing, capable to make decisions for them,” said Sara Krieger, CEO of Iowa City Hospice. Iowa City Hospice said it has been working for years to add “close adult friend” to that list through legislation.