Literature Review

What I learned about dying while caring for my husbandBK Books; by Barbara Karnes; 9/3/25It is hard to comprehend that our special person will die no matter what we do. No matter how many treatments, how much medicine, or how much food we give, death will come. We often don’t see what we don’t want to see. When it comes to acknowledging the end of life’s approach, this sentence is very true. My husband recently died of cancer. I am an end of life educator. I know what dying looks like, how it progresses, and what to do to support the person on their journey. Here are some insights that have been added to my knowledge as the result of walking in caregiver shoes...Publisher's note: Having a family member die earlier this year, and building on Barbara's theme, I ask hospice providers "does the hospice care your loved one received match the quality of hospice care you deliver?"

Artificial intelligence in geriatric health careHealth Affairs; by Esther S. Oh, Peter M. Abadir, Joseph Grogan, Ravi Gupta, Anne Ollen, Daniel Polsky, Peter Weems, Phillip Phan; 8/20/25Artificial intelligence (AI)-based technologies are quickly integrating into the US health care system. Unlocking their full potential for older adults—the fastest-growing demographic in the country—and rural populations facing health access and support crises is essential. On May 1, 2025, the Johns Hopkins Artificial Intelligence and Technology Collaboratory (represented by coauthors Oh, Abadir, and Phan) and the National Institute on Aging hosted a summit on the future of geriatric medicine and AI, focusing on the challenges and effects of implementing AI-based technologies. We identified policy gaps and opportunities to support the fair and efficient use of AI technologies for older adults [including:]

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".

CMMI’s new strategic direction: Three priorities for successHealth Affairs; by Joshua M. Liao; 8/18/25The Center for Medicare and Medicaid Innovation (CMMI) recently released a new strategy to “Make America Healthy Again.” Broadly, this direction seeks to emphasize prevention, patient engagement, and empowering people to achieve their health goals. [These goals include:]

Estimating the number of services & patients receiving specialized palliative care globally in 2025 Journal of Pain and Symptom Management; by Stephen R Connor, Eduardo Garralda, Vilma A Tripodoro, Carlos Centeno; 7/28/25 online ahead of print ... In 2025, the estimated number of specialized palliative care service delivery teams worldwide reached approximately 33,700 - representing a 32.7% increase from the 25,000 identified in 2017. Service delivery expanded across all WHO regions except Africa. The estimated number of patients served rose from 7 million in 2017 to approximately 10.4 million in 2025. This figure represents roughly 14% of the total global need for palliative care. ... Despite notable growth in service availability, significant disparities persist, particularly in low- and middle-income countries. While over half of the need appears to be met in high-income countries, only 4.4% is addressed by specialist provision in low and middle-income countries. 

Why research palliative, supportive, and end-of-life care?Oxford Academic; by David C Currow, Nancy Preston; 5/25[Chapter 1 in Research Methods in Palliative, Supportive, and End-of-Life Care, Second edition.] It is crucial that clinical practice and public policy in palliative care are based upon the most robust research. In palliative care, the benefits of interventions offered have been systematically overestimated, and their harms underestimated. High-quality evidence is needed that directly informs practice by understanding how patients and carers experience palliative care and how best to respond to their feedback.

A strategic path forward for hospice and palliative care: A white paper on the potential future of the fieldPalliative Medicine Reports; by Ira Byock; 6/5/25The field of hospice and palliative care in the United States is experiencing serious problems and faces an uncertain future. Quality of hospice care is highly variable. Unethical hospice business practices are common in some regions. Palliative care’s integration within American health care has stalled, despite demonstrating that much better care for seriously ill and dying people is both feasible and affordable... Efforts must start with zero tolerance of fraudulent business and clinical practices that harm vulnerable patients. The four components of this strategic approach are:

Top story this week last year - 5/19/24Retraumatization when an adult child cares for the parent who harmed them through serious illness or the end of lifeJournal of Pain and Symptom Management; by Jaime Goldberg, Jooyoung Kong; 5/24Adult children caring for a parent who harmed them through the parent's serious illness or the end of life are at high risk for experiencing retraumatization. This session will offer trauma-informed, culturally responsive, person-centered tools and techniques hospice and palliative care professionals can use to effectively identify, assess, and intervene with this often-overlooked population of caregivers.Publisher's note: This current article summary is for an upcoming AAHPM conference workshop. The study was previously published in JPSM 5/24 here.

Top story this week last year - 5/5/24Measuring decision aid effectiveness for end-of-life care: A systematic reviewPEC Innovation; M. Courtney Hughes, Erin Vernon, Chinenye Egwuonwu, Oluwatoyosi Afolabi; 4/24A total of 715 articles were initially identified, with 43 meeting the inclusion criteria. Outcome measures identified included decisional conflict, less aggressive care desired, knowledge improvements, communication improvements, tool satisfaction, patient anxiety and well-being, and less aggressive care action completed. The majority of studies reported positive outcomes especially when the decision aid development included International Patient Decision Aid Standards.Publisher's note: Also by these co-authors, please see The effectiveness of community-based palliative care program components: A systematic review (Age and Ageing, 2023) and Measuring effectiveness in community-based palliative care programs: A systematic review (Social Science & Medicine, 2022).

A doctor’s tumor rupture upends all she thought she knewMedscape Nurses; by Rana Awdish as told to Sarah Yahr Tucker; 3/17/25At some point, every doctor becomes a patient. For many physicians, experiencing serious illness and treatment is humbling, eye-opening, and, in the end, transformative. Dr. Patient is a Medscape series telling these stories... I was 7 months pregnant and it was my last day of fellowship. I went to dinner with my best friend to celebrate, and at the table I had excruciating abdominal pain that led me to present to my hospital. I didn’t know yet, but I had a noncancerous tumor in my liver that ruptured... There’s a lot of good evidence that when physicians communicate with empathy, a patient is less likely to come back to the ER for the same complaint... It’s as effective as any drug we have. I learned this from one of the surgeons who operated on me... He looked at me and said, “I want you to tell me what you’re most afraid of.” I said, “I’m afraid of having an ostomy bag when I leave the operating room.” And he said, “I can’t tell you how much I don’t want that to happen to you. I’m going to do everything I can to make sure that doesn’t happen.” With that one question and answer, I understood that our work for our patients is to hold their fear. I didn’t know that my fear couldn’t be bludgeoned to death with data. I thought if I had the right data, I would feel better. But nothing was ever going to make that better except him acknowledging my fear and holding it for me.Publisher's note: I recently experienced how healthcare, including hospice, is very different when we are the patient - or in my case, the son. So much to be thankful for; so much to learn. Also see the author's article Never-Words: What not to say to patients with serious illness.

Researchers raise concerns about the financial sector's rising role in US illness care Medical Xpress; by Mary Ann Liebert, Inc; 10/16/24 The authors of a new article in Journal of Palliative Medicine state that the "growing role of the financial sector in home health and hospice, a reflection of larger trends in U.S. health care, is concerning and has major implications for care quality unless reforms are undertaken." Co-authors Lauren Hunt, Ph.D., RN, FN, with the University of California, San Francisco, and R. Sean Morrison, MD, with the Icahn School of Medicine at Mount Sinai in New York, observe that home health and hospice began as nonprofit organizations with close ties to their communities. However, the overwhelming majority are now for-profit entities, many of which have become targets for private equity buyouts. The authors note that "big business's emphasis on maximizing profit can be at odds with patient welfare. Indeed, a substantial body of evidence now demonstrates that care quality is consistently worse in for-profits as compared to nonprofits," they state. The authors further express concern that "pressure to achieve high returns on very short-term time horizons may conflict with the need for longer-term investments in quality, training, and staffing, thus reducing care quality.Publisher's note: I suspect this will be the next "big" article summarizing the role of private equity in hospice.