Literature Review

Whatever you want to do, if you want to be great at it, you have to be able to make sacrifices for it. ~ Maya Angelou

The miracle is not that we do this work, but that we are happy to do it. ~ Mother Teresa

The more I want to get something done, the less I call it work. ~ Richard Bach

You can’t do a good job if your job is all you do. ~ Katie Thurmes

Never get so busy making a living that you forget to make a life. ~ Dolly Parton

Letter: A strategic path forward for hospice and palliative care must focus on equity: A response to ByockPalliative Medicine Reports; by Karen Bullock, Ramona L. Rhodes, Marisette Hansan, Kimberly S. Johnson; 8/21/25In a letter to the editor critiquing Ira Byock’s recent white paper, the authors say: “one of the most urgent uncomfortable truths is briefly and incompletely acknowledged in the article. That is, not only do historically marginalized communities face unequal access to the benefits and progress of our field; they endure a disproportionate share of practices that lead to poor quality care, including many of the challenges that Byock highlights.” While applauding the article’s call to action, they caution that:

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. That work won’t come from quarterly board meetings or compliance audits. It will come from listening - really listening - to those most affected. It will come from rethinking how we define “home,” “caregiver,” and “worthy.” It will come from a shift in focus: from profits to people, from efficiency to empathy, from “standard of care” to standard of justice... 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".

Social Media Watch 8/22/25

Lessons from U.S. Army Special Ops on becoming a leaderHarvard Business Review; by Angus Fletcher; 8/19/25In today’s volatile and uncertain world, leadership skills have become more crucial than ever, yet many organizations struggle to train their managers to lead effectively. But experiential learning and failure-based training, as practiced by U.S. Army Special Operations, can transform managers into leaders who excel in high-pressure situations. By focusing on initiative, emotional confidence, imagination, and strategic vision, the Special Ops curriculum offers a unique and effective approach to leadership development that can be adapted to various industries and organizational contexts. This method has shown remarkable success in both military and business settings, making it a valuable resource for companies looking to cultivate strong leaders in times of uncertainty.

Amid growing 'scandal' of elder homelessness, health care groups aim to help NPR, Bristol, RI; by Felice J. Freyer; 8/16/25 At age 82, Roberta Rabinovitz realized she had no place to go. A widow, she had lost both her daughters to cancer, after living with one and then the other, nursing them until their deaths. Then she moved in with her brother in Florida, until he also died. ... Rabinovitz joined the growing population of older Americans unsure of where to lay their heads at night. But Rabinovitz was fortunate. She found a place to live, through what might seem like an unlikely source — a health care nonprofit, the PACE Organization of Rhode Island.

COUNTDOWN: 30 Days Until HOPE Tool Starts, October 1, 2025

NorthStar Care Community announces partnership with Beads of Courage Fox 17 - West Michigan;by Nicole Stoner; 8/19/25 Beads Of Courage is an organization that helps pediatric patients document their health journey through beads of different sizes, shapes, and colors. ... NorthStar Care Community, already established for their compassion in pallative and hospice care, has announced a partnership with Beads Of Courage. This time, the partnership honors patients entering hospice care through their own treatment stages, milestones, and moments of courage. ... In addition, the Carry A Bead Initiative invites the public to support these patients on their journey during end-of-life care by carrying a NorthStar Bead with them, then returning it with a message of encouragement. The bead is then gifted to someone in hospice care, ensuring that these patients are not alone in their health journey.

Serious illness and end of life in LGBTQIA+ older adultsDelaware Journal of Public Health; by Sarah Matthews; 7/25Gender-affirming care is just as important during serious illness and end of life. Typically, gender-affirming hormone therapy is maintained throughout life to provide masculinizing or feminizing effects as desired. At end-of-life, it may be the person’s wish to continue hormones even if the medication poses additional risk. Whenever possible, gender expression preferences of LGBTQIA+ elders should be honored. TRANSforming Choices Healthcare Decisions Starter Guide is an excellent resource for transgender, gender-diverse, and gender-expansive people to make choices about their healthcare including gender-affirming care. Funeral directives are available to ensure that LGBTQIA+ elders’ funeral wishes are followed, including name, pronouns, and presentation of the body.