Literature Review

[Germany] Web-based educational tools and decision aids for patients with advanced cancer: A systematic reviewPatient Education and Counseling; Phoebe Ullrich, Henrike Voß, Laura Unsöld, Michael Thomas, Matthias Villalobos; 2/25In advanced cancer care, patient involvement in decision-making is complex. Web-based solutions are promising because of easy accessibility and dissemination and the ability to adapt information to patients' needs and new treatment developments. Still, only a few evidence-based web-based educational tools and decision aids are available. Filling this gap is essential to empower patients to make informed and goal-concordant treatment decisions.

Evaluating performance of the Surprise Question to predict 12-month mortality in patients with end-stage liver diseaseAmerican Journal of Hospice and Palliative Care; Sarah Homann, MD; Jamie Pfaff, MD; Elizabeth Stovicek, MD; Rajiv Agarwal, MD, MSC;, Sumathi K. Misra, MD, MPH; Jill M. Pulley, MBA; Justin K. Siemann, PhD; Ashley Spann, MD, MSCAI; Stacey Tillman, MD; Cheryl L. Gatto, PhD; Mohana Karlekar, MD; 2/25ESLD [end-stage liver disease] is associated with significant morbidity and mortality. Early PC engagement has been proposed as a solution to improve the physical and psychological burden associated with ESLD. ... hepatologists were asked the SQ [surprise question]: “Would you be surprised if this patient were to die in the next 12 months?” as a prompt to consider consultation to specialty PC [palliative care]. While the SQ should not be solely used as a prognostic indicator of death, our study proves that the SQ can be utilized by hepatologists as a screening tool with good sensitivity for identifying patients with ESLD who may be at higher risk of death and therefore may benefit from PC co-management.

VITAS Healthcare is first hospice organization to earn American Heart Association Heart Failure Certification across all 15 states and DC Florida News Guide, Miami, FL; Press Release; 3/18/25 ... VITAS has become the first nationwide hospice provider to earn the American Heart Association® Palliative/Hospice Heart Failure certification across all 15 states in which it operates. The certification applies to 56 unique VITAS service areas, including the District of Columbia. ... “Many patients with heart failure do not receive the hospice care that could significantly improve their final months of life,” said Joseph Shega, MD, executive vice president and chief medical officer at VITAS. “This certification affirms our commitment to providing evidence-based hospice care that helps patients and families navigate advanced heart disease with dignity, comfort and the right level of support.”

2010 to 2019 saw early palliative care billing up for advanced cancer HealthDay News; by Elana Gotkine; 3/17/25 For patients with distant-stage cancers, there was an increase in early palliative care (PC) billing from 2010 to 2019, but the level remained low, according to a study published online March 7 in the Journal of Clinical Oncology. ... The researchers found that in 2010 to 2019, there was an increase in the percentage with early PC billing among 102,032 patients treated by 18,908 unique physicians, from 1.44 to 10.36 percent. The likelihood of early PC billing was increased in association with treating physician's early PC referrals in the previous year and organizations' employment of any HPM specialist (3.01 and 4.54 percentage points, respectively). 

Terminally ill Stanford professor teaches class about dying from cancerCBS News, Bay Area, CA; by Elizabeth Cook; 3/13/25 A Stanford University professor's new curriculum explores the multiple aspects and phases of a person dying of cancer, and it comes from a person with first-hand knowledge. Dr. Bryant Lin has been a professor for almost two decades. He's used to being the teacher, not the subject of his classes. But that all changed in 2024 when he was diagnosed with stage 4 lung cancer. ... The diagnosis was a dose of cruel irony. Lin co-founded the Center for Asian Health Research and Education. One of the priorities for the foundation is researching non-small cell adenocarcinoma, also known as "never-smoker lung cancer," the same cancer diagnosis that Lin received. ... The class is called "From diagnosis to dialogue: A doctor's real-time battle with cancer." Within minutes of being posted, the class and the waitlist were full. ... The 10-week course covers the entire spectrum of cancer as seen through the eyes of someone who is living it. ... Stanford University recorded every session of the class so that they could live on for future physicians. If you would like to watch them, they can be found on YouTube. 

2024 Alzheimer's Disease Facts and Figures: Mapping a better future for dementia care navigation Alzheimer's Association, Chicago, IL; www.alz.org; 2024 2024 Alzheimer’s Disease Facts and Figures is a statistical resource for U.S. data related to Alzheimer’s disease, the most common cause of dementia. Background and context for interpretation of the data are contained in the Overview. Additional sections address prevalence, mortality and morbidity, caregiving, the dementia care workforce, and the use and costs of health care and services. The Special Report provides a comprehensive look into dementia care navigation, revealing significant insights into the experiences and challenges faced by caregivers and health care workers in helping people living with Alzheimer’s or other dementia navigate the health care system. [Click on the title's link to access and download this 149-page PDF]

The staging of 'The Story of My Life' at Asbury Memorial filled with serendipitous moments Savannah Morning News, Savannah, GA; by Amy Paige Condon; 3/6/25 ... [Ray] Ellis, a retired music and drama teacher who works now as a caregiver, and fellow church member Dottie Kluttz, a retired hospice nurse, were hanging decorations in Asbury Memorial’s Social Hall. Ellis shared how his dream of producing “The Story of My Life” was back on his mind … A former hospice nurse, Kluttz founded Savannah Hospice’s Story Keeping program in 2001 as a way for people near the end of their lives to share the story of their lives. …  [Click on the title’s link to read the serendipitous, synergistic encounters that unfolded, resulting in shows March 28, 29, 30.] [Upon underwriting for production costs,] Ellis proposed that ticket sales for the musical could serve as a fundraiser for Savannah Hospice’s Story Keeping program and the Michael J. Fox Foundation for Parkinson’s Research—a nonprofit near and dear to Ellis, who was diagnosed about three years ago with the progressive brain disease that causes tremors, stiffness and balance problems. … Stage and film actor Mark Rand, who was diagnosed with Parkinson’s around the same time as Ellis, agreed to portray Thomas to Ellis’s Alvin—even after Rand thought he would never perform again. …

Report finds those with Parkinson’s have unmet hospice needsMcKnights Long-Term Care News; by Kristen Fischer; 3/6/25 Hospice use varies depending on whether a person has Parkinson’s disease, Lewy body dementia or Alzheimer’s disease and those with Parkinson’s may have more unmet needs, a new study finds. Researchers evaluated data on 11,327,324 Medicare beneficiaries enrolled in hospice between 2010 and 2020 as part of their study, which was published Tuesday in JAMA Network Open. ... Hospice enrollees who had Parkinson’s disease and dementia with Lewy bodies were less likely to be disenrolled from hospice due to extended prognosis compared to those with Alzheimer’s disease. People who had Parkinson’s disease but not dementia with Lewy bodies were more apt to have longer stays over 180 days and turn hospice away compared to those with Alzheimer’s disease. (Short stays were defined as those less than seven days.)

Algorithm-based palliative care in patients with cancer-A cluster randomized clinical trialJAMA Network Open; Ravi B. Parikh, MD, MPP; William J. Ferrell, MPH; Yang Li, MS; Jinbo Chen, PhD; Larry Bilbrey; Nicole Johnson, BSN; Jenna White, MSW; Ramy Sedhom, MD; Natalie R. Dickson, MD; Stephen Schleicher, MD; Justin E. Bekelman, MD; Sandhya Mudumbi, MD; 2/25In this randomized clinical trial conducted in a community oncology network between November 2022 and December 2023 among 562 patients with advanced cancer identified by an automated electronic health record algorithm, default orders increased palliative care consultation (44% vs 8%) and decreased end-of-life systemic therapy (6% vs 16%) compared with usual care but did not improve patient-reported or hospice outcomes. The findings suggest that default algorithm-based palliative care orders are a scalable implementation strategy to increase palliative care referrals and reduce intensive end-of-life care. 

1 in 7 Medicaid users go to nursing home after cancer diagnosis, study finds McKnights Long-Term Care News; by Kristen Fischer; 3/5/25 One in 7 Medicaid beneficiaries received care at a nursing home after they were newly diagnosed with cancer, a new study finds. People who went to nursing homes were more likely to be white or Black, and dual-eligible for Medicaid and Medicare, compared to those who did not use nursing homes and primarily had short nursing home stays. The study was published Tuesday [3/4] in the Journal of the American Geriatrics Society. ... Investigators examined data from 338,767 Medicaid beneficiaries spanning 45 states who were newly diagnosed with cancer and were diagnosed with cancer in 2017 or 2018. ... The most prevalent cancer types associated with short and long stays were lung, breast and hematological.  The high number of people who are dual-eligible and going to nursing homes after a cancer diagnosis is an important policy issue, the authors wrote. 

Patient put in hospice at 52 celebrates life years after admission, thanks to heart surgery KCTV-5, Kansas City, MO; by Morgan Riddell; 2/27/25 A local man with heart failure who was told numerous times he only had months to live now has a new outlook on life two years later. ... It started in 2023. Sam Edwards, who was diagnosed with ALS after serving in the military, started experiencing new pains. He went to doctors who all determined Sam was just experiencing issues related to ALS. Then, a doctor at the VA Hospital noticed some tests were off and found Sam was experiencing heart failure. What he needed was open heart surgery, but doctors determined the risk of putting Sam on the operation table was too high. Not only was he at risk of having a stroke and dying on the operating table, but his recovery would also be months long and painful. They declined to do the surgery at the VA and suggested Sam go get a second opinion. This is when he was connected with Dr. Michael Gibson.Editor's note: While we in the palliative and hospice field promote earlier admissions to care and elimination of overtreatment, another side of the coin exists. Click on the title's link to read more about this hospice patient who sought out a second opinion. Imagine: the hospice patient is you (at age 52); or a family member; or a best friend. Especially as AI becomes more prevalent in assessing palliative and hospice referrals, we must see the bigger picture and retain human element. 

Associations between end-stage ALS care and specialty palliative care: A hypothesis-generating studyMuscle and Nerve; Christi M Lero, Annabelle Yang, Elyse Everett, Kyle A Pitzer, Kelly McCoy Gross, Karla T Washington; 2/25Amyotrophic lateral sclerosis (ALS) care is typically delivered via a multidisciplinary approach that may include specialty palliative care (SPC). Patients who received SPC (59%), had lower mean forced vital capacity ... , and more often used respiratory support ... , participated in goals of care conversations ... , reported a healthcare proxy ... , and enrolled in hospice ... than patients who received standard care alone. No differences between groups were found in duration of illness (mean = 51.7 months), use of assistive feeding, Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) scores, ... documentation of a healthcare proxy, length of hospice stay (mean = 47.3 days), or location of death.

Leading early conversations about ICD [implantable cardioverter defibrillator] use in end-of-life cancer care  Cancer Network; by Megan Mullins, PhD, MPH; 2/21/25 Earlier and more frequent talks about disabling ICDs with patients receiving end-of-life care and their families may help avoid excessive pain. ... Regarding implantable cardioverter defibrillators (ICDs) in those with fatal cancers, it is critical that patients know what having a device means and how it impacts end-of-life care, according to Megan Mullins, PhD, MPH. CancerNetwork® spoke with Mullins, assistant professor in the Peter O’Donnell Jr. School of Public Health, the Harold C. Simmons Comprehensive Cancer Center, and the Department of Internal Medicine at UT Southwestern Medical Center, about how ICD deactivation prior to end-of-life care could impact clinical practice in patients with advanced cancers. ... She emphasized that device deactivation would allow the body to undergo the natural dying process without unnecessary painful shocks associated with the use of the device.