Literature Review

Hospice was meant to offer dignity in death — but it fails the most marginalized. We need hospice programs that go to the streets, into shelters, behind barsSTAT; by Christopher M. Smith; 8/26/25I’ve spent more than a decade in hospice care, sitting at the bedsides of people facing the final days of their lives. I’ve held hands in hospital rooms, in tents, in prison cells, and in homes that barely qualify as such. And over time, I’ve come to see that dying in America is not just a medical event — it’s a mirror. It reflects everything we’ve failed to do for the living. Hospice was created to bring dignity to the dying — to manage pain, provide emotional and spiritual support, and ease the final passage for people with terminal illness. But the systems surrounding hospice care are riddled with inequity. The very people most in need of compassion — the unhoused, the incarcerated, people of color, LGBTQ+ individuals, and people with disabilities — are systematically excluded, underserved, or erased. Access to a good death is too often reserved for the privileged, while everyone else is left to navigate a system that wasn’t built for them — or worse, actively works against them... The truth is, hospice care cannot achieve its mission unless it actively addresses the inequities built into the structures around it. We need hospice programs that go to the streets, into shelters, behind bars. We need training rooted in cultural humility, in antiracism, in trauma-informed care. We need to reimagine what it means to offer dignity to someone whose life has been defined by abandonment... Because dying is universal. But justice, even at the end of life, is still not.Publisher's note: STAT also references Dr. Ira Byock's article "The hospice industry needs major reforms. It should start with apologies, 8/22/23".

Medicare Home Health Care is the ideal platform for home-based palliative care at the end of lifeJournal of Palliative Medicine; by Tessa Jones and Sean Morrison, with Guest Editor note by Ira Byock, MD; 6/10/25Recognizing the central role of HH as a de facto means of providing home-based palliative care—and strategizing how to integrate palliative care principles and education into it—holds the potential to expand access to palliative care services and improve the quality of end of life for older Americans. The authors identify four main barriers to successfully integrating HH into the suite of palliative care delivery models. First, the HH workforce lacks training in fundamental palliative care. Second, the current lack of ongoing physician involvement in the HH setting. Third, reimbursement. Palliative care services are often excluded from traditional payment models, particularly in the HH setting. Lastly, financialization of the HH sector. They say that integration of palliative care within for-profit HH agencies may require a strategic emphasis on financial incentives.Guest Editor Note, Ira Byock, MD: This academic oped extends the drumbeat toward alternatives to hospice care. Overcoming barriers to home-based palliative care requires steps that are strikingly similar to those needed to make hospice programs successful. The authors repeatedly refer to HH interdisciplinary teams. In fact, home health is a multidisciplinary model of service delivery that lacks the clinical synergy of high-functioning interdisciplinary hospice teams.