Literature Review

Twenty-fourth proclamation relating to wildfiresOffice of the Governor - State of Hawai'i, Hawaii.gov; by Reece Kilbey; 7/7/25By the authority vested in me by the Constitution and laws of the State of Hawai’i, to provide relief for disaster damages, losses, and suffering, and to protect the health, safety, and welfare of the people, I, Josh Green, M.D, Governor of the State of Hawai’i, hereby proclaim as follows: ... [This lengthy document has 8 references to "hospice."]

Medicaid provisions threaten home and community-based services for millions of vulnerable Americans National Alliance for Care at Home, Alexandria, VA and Washington, DC; Press Release; 7/3/25The National Alliance for Care at Home (the Alliance) issued the following statement today in response to the House’s passage of the “One Big Beautiful Bill Act,” also known as the Reconciliation bill, which now heads to President Trump’s desk for his signature. “The Alliance is deeply troubled by the Medicaid provisions within the One Big Beautiful Bill Act, which has passed both chambers of Congress and now awaits President Trump’s signature,” said Alliance CEO Dr. Steve Landers. “These provisions—including work requirements, reduced provider taxes, and new cost-sharing mandates—prioritize short-sighted budget savings over the health and wellbeing of our most vulnerable citizens who rely on home and community-based services (HCBS).” The home care community advocated throughout the legislative process for Congress to mitigate these harmful Medicaid provisions.

Alliance Statement on House passage of Reconciliation Bill: Medicaid provisions threaten home and community-based services for millions of vulnerable Americans National Alliance for Care at Home, Alexandira, VA and Washington DC; Press Release; 7/3/25 The National Alliance for Care at Home (the Alliance) issued the following statement today in response to the House’s passage of the “One Big Beautiful Bill Act,” also known as the Reconciliation bill, which now heads to President Trump’s desk for his signature. “The Alliance is deeply troubled by the Medicaid provisions within the One Big Beautiful Bill Act, which has passed both chambers of Congress and now awaits President Trump’s signature,” said Alliance CEO Dr. Steve Landers. “These provisions—including work requirements, reduced provider taxes, and new cost-sharing mandates—prioritize short-sighted budget savings over the health and wellbeing of our most vulnerable citizens who rely on home and community-based services (HCBS).”

The Alliance responds to Senate passage of Reconciliation Bill National Alliance for Care at Home, Alexandira, VA and Washington, DC; Press Release; 7/1/25 The National Alliance for Care at Home (the Alliance) issued the following statement today in response to the Senate’s passage of the “One Big Beautiful Bill Act,” also known as the Reconciliation bill. “The Alliance is alarmed by the Senate’s passage of the One Big Beautiful Bill Act, which prioritizes misplaced budget cuts over the health and wellbeing of our most vulnerable. The legislation will reduce access to care and support for the millions of Americans who rely on home and community-based services (HCBS),” said Alliance CEO Dr. Steve Landers. ... “The Alliance continues to maintain that the complexity of the Medicaid program makes it nearly impossible to reduce expenditures by the amounts contemplated by this legislation – potentially exceeding $1 trillion over ten years – without impacting services to older adults and people with disabilities. The Alliance will advocate on behalf of Medicaid enrollees, families, and providers nationwide ...

Trump administration to end 988 suicide prevention specialized service for LGBTQ+ youth in JulyCNN; by Jacqueline Howard; 6/18/25The 988 Suicide & Crisis Lifeline’s specialized services for LGBTQ+ youth will no longer be in operation starting July 17, according to a statement from the US Department of Health and Human Services’ Substance Abuse and Mental Health Services Administration (SAMHSA). ... According to the latest data from SAMHSA, more than 14.5 million people have called, texted or sent chats to the 988 Lifeline and have been transferred to a crisis contact center since July 2022. Nearly 1.3 million of those were routed to the LGBTQ+ specialized service.Editor's Note: This 988 LGBTQ+ specialized option was piloted in September 2020, expanded on March 6, 2025, and rolled out fully nationwide in July 2023. This data translates to approximately 1,250 LGBTQ calls per day; 52 calls per hour; 1 call per minute. Who--in your world of family and friends--might this ultimately affect? Research, data, and personal stories (sure to be in each of our circles of family and friends) tell us why this matters. A resource for you to use is The Handbook of LGBTQIA-inclusive Hospice and Palliative Care, 2nd edition by Kimberly D. Acquaviva. This handbook is the first place winner, 2024 American Journal of Nursing Book of the Year Award in Palliative Care and Hospice.

National Alliance for Care at Home champions bipartisan legislation to transform access to quality in-home skilled nursingNational Alliance for Care at Home press release; by Elyssa Katz; 6/20/25The National Alliance for Care at Home (the Alliance) is pleased to support the introduction of the Continuous Skilled Nursing Quality Improvement Act of 2025. This bipartisan legislation, Senate Bill 1920, introduced by Senator Thom Tillis (R-NC) and Senator Maggie Hassan (D-NH) aims to improve the quality and accessibility of skilled nursing care by modernizing Medicaid’s approach to private duty nursing.

Colorado exemplifies how to build opon paid leave progress to meet families’ evolving needs A Better Balance; 6/3/25 Colorado continues to pave the way for strong work-family protections by modeling how these policies can be expanded to meet families' needs. This spring, Colorado expanded the state’s paid family and medical leave program (the FAMLI Act, which our Colorado Office helped write and pass) to include an additional 12 weeks of paid leave for parents with a baby in the neonatal intensive care unit. Governor Polis signed the bill into law on Friday, May 30th, and Colorado workers with a child in the NICU will be able to take additional leave under the expansion beginning on or after January 1, 2026. ... For parents with children in the NICU, additional time off work to remain present can be a lifeline during a stressful time.Editor's note: As we know, the fragile and uncertain health of an infant in a neonatal intensive care unit can, heartbreakingly, lead to death. This—one of the most devastating forms of loss—often leaves parents to grieve in silence, their sorrow compounded by the experience of disenfranchised grief. While family and friends care deeply, they frequently falter in their efforts to provide meaningful support. Though it has been more than two decades since I served on the Pediatric Team at Hospice & Palliative Care of Louisville—only four years in total—my memories remain vivid. The emotions expressed by mothers and fathers, grandparents and siblings still rise easily to the surface, reminding me how enduring and raw such losses can be. Bravo ti Colorado's FAMLI Act. May more states follow their lead.

Rosen introduces bipartisan bills to expand access to palliative care, hospice careJacky Rosen, U.S. Senator for Nevada, Washington, DC; 6/5/25 U.S. Senator Jacky Rosen, co-founder and co-chair of the bipartisan Senate Comprehensive Care Caucus, announced the introduction of a pair of bipartisan bills to expand access to palliative and hospice care. The Expanding Access to Palliative Care Act with Senators Barrasso (R-WY), Baldwin (D-WI), and Fischer (R-NE) would establish a demonstration project through Medicare to expand access to palliative care at the time of diagnosis of serious illness or injury. The Improving Access to Transfusion Care for Hospice Patients Act with Senators Barrasso (R-WY) and Baldwin (D-WI) would carve out payment for transfusion services within the Medicare hospice benefit, allowing for separate billing to Medicare for transfusions. This would improve access to hospice care for patients who rely on transfusion care to maintain quality of life.

40 years after Karen Ann Quinlan’s death, NJ right-to-die case still stirs strong emotions New Jersy Herald; by William Westhoven; 6/4/25 ... Today, Americans are free to declare those rights [about dying] in the form of advance directives such as a living will. For that, we have one New Jersey family to thank: the parents and siblings of Karen Ann Quinlan, whose faith carried them through the arduous process of turning their tragedy into a legal victory that changed the way Americans approach the end of life. They were aided by a collection of attorneys and judges on both sides of the life-or-death case who chose to work "as adversaries but not enemies." Karen, then 21, fell into an irreversible coma after attending a party in Sussex County on April 15, 1975. She died 40 years ago, on June 11, 1985, in a Morris County nursing home.Editor's note: I remember this. Do you? In the midst of today's MAiD legislation, lobbying, and often highly inflammatory stances, I'm struck by this article's description, "They were aided by a collection of attorneys and judges on both sides of the life-or-death case who chose to work "as adversaries but not enemies." Yes, strong emotions and beliefs still drive both sides. Yes, we still choose how to work together. 

Q&A with Jim Obergefell on the future of Supreme Court's gay marriage ruling, LGBTQ rights Fremont News Messenger; by Laura A. Bischoff; 6/1/25 In 2013, Ohioans Jim Obergefell and John Arthur flew on a medical jet to exchange vows in Maryland where same-sex marriage was legal at the time. With Arthur in hospice care for amyotrophic lateral sclerosis, time was slipping away for the Cincinnati couple and their home state of Ohio prohibited same-sex marriage. Days after their tarmac wedding, civil rights attorney Al Gerhardstein showed them a blank Ohio death certificate. "Do you guys understand that when John dies, his last record as a person will be wrong here, where it says marital status at the time of death?" Gerhardstein told them. "Ohio will say John was unmarried. And Jim, your name will not be here, where it says surviving spouse name." Brokenhearted and angry at the idea of not being recognized by Ohio, Arthur and Obergefell told Gerhardstein, yes, they wanted to do something about it. Arthur didn't live to see the fruits of that decision: On June 26, 2015, in a 5-4 decision in Obergefell v. Hodges, the U.S. Supreme Court decided states must allow for same-sex marriages and must recognize those solemnized in other states. Arthur died in October 2013 at the age of 48.

Illinois House passes bill allowing terminally ill people to end their lives with physician’s help Chicago Tribune, Springfield, IL; by Jeremy Gorner and Addison Wright; 5/30/25 Legislation that would allow terminally ill people to end their lives with the help of a doctor was narrowly passed by the Illinois House and now heads to the Senate. It marks the first time a medical aid in dying bill has passed through one legislative chamber in Illinois since advocates unsuccessfully pushed for the practice to be legalized in the state last year. The bill passed late Thursday by a 63-42 vote, just three votes more than the minimum number required for bills to pass the House by a simple majority, with a handful of Democrats joining Republicans in voting against it.

Providers, advocates ask Senate to reject $700M in Medicaid cuts, Congress to save OAA programs McKnights Senior Living; by Kathleen Steele Gaivin; 5/27/25Providers and advocates for older adults are counting on the Senate to reject a portion of the proposed federal budget that would gut $700 million from the Medicaid program. Members of the House of Representatives passed their version of the bill late Wednesday. ... Home care advocates ANCOR and the National Alliance for Care at Home on Thursday also called on the Senate to reject the House-passed cuts to Medicaid.

Colorado end-of-life care residency requirement challenged Bloomberg Law; by Ryan Autullo; 5/22/25 A terminally ill Minnesota man is asking a federal court to let doctors in Colorado administer drugs to him so he can die peacefully there, a challenge to the state’s residency requirement in accessing end-of-life care. Prohibiting Colorado doctors from giving non-residents drugs to ease suffering in their final months is unconstitutional, lawyers for Jeff McComas wrote in a complaint filed Thursday in the US District Court for the District of Colorado.