Literature Review

Pittsburgh Caregivers get federal lifeline as dementia cases swell across Allegheny County hoodline; by Ryan Miller; 8/21/26 Caregivers looking after loved ones with dementia in Pittsburgh now have a new federal tool to lean on, and it is already showing up at a day center in Squirrel Hill. The Anathan Club, run by the Jewish Association on Aging, has begun connecting families to the Guiding an Improved Dementia Experience Model, a Medicare program that can cover up to $2,500 a year in respite care for qualifying beneficiaries. The Guiding an Improved Dementia Experience Model, known as GUIDE, was developed by the Centers for Medicare and Medicaid Services and launched nationwide on July 1, 2024, as an eight-year voluntary pilot running through June 30, 2032, according to CMS. Nearly 390 provider organizations across the country are participating. 

Advance care planning in sickle cell disease: A scoping reviewJournal of Palliative Medicine; by Megan R Marshall, Miranda Ravicz Adelmann, Miriam A Osei, Sharl S Azar, Stephanie Kiser, Richard Newcomb; 7/26Sickle cell disease (SCD) is an inherited hemoglobinopathy characterized by abnormal red blood cell sickling, leading to pain, organ dysfunction, and early mortality. Its severe, unpredictable course and the emergence of complex decisions surrounding transformative therapies have prompted recommendations to integrate palliative care (PC) to support patients and families. The limited available evidence suggests that patients are open to ACP discussions with trusted clinicians, but few patients had participated in formal or informal ACP. Personal and environmental factors may influence ACP engagement, including patient-clinician trust, patient and clinician understanding of ACP in SCD, timing of ACP conversations, and previous experiences with critical illness or end-of-life care. Proposed steps for advancing ACP in SCD include education, early PC integration, and strengthened patient-clinician communication and relationships.

Goal-concordant care for older adults with advanced heart failure: A retrospective cohort studyPalliative Medicine; by Sarah Godfrey, Maryjane Farr; 7/26Older adults with advanced heart failure experience significant morbidity and mortality and face higher complication rates from advanced therapies. Of 212 patients, 91 (42.9%) underwent evaluation for advanced therapies, though few received a heart transplant (16, 7.5%) or left ventricular assist device (32, 15.1%). Most (148, 69.8%) had only one palliative physician visit. One hundred thirty-nine (65.6%) died, often in the hospital (55, 40%) and with life-sustaining therapy in the last 24 h (73, 52.5%). Most (167, 78.8%) received goal-concordant care, with the main reasons for discordance being the desire for advanced therapy (33, 15.6%) and complications post-implantation affecting quality of life (9, 4.2%). Conclusions: Few older adults received advanced therapies, and palliative care was underutilized, with many patients seeing palliative care only once. Most received goal-concordant care, but decisions were often made late, highlighting the need for earlier, longitudinal palliative care for these vulnerable patients.

Dementia coach Jeannine Forrest of Through the Forrest recently featured on Close Up Radio EIN Presswire, Chicago, IL; by Close Up Television & Radio; 8/17/26 Jeannine Forrest still remembers the moment her mother looked at her in her own home and said, “I’m living in a house of strangers.” At that moment, as a registered nurse, she realized she was not prepared to understand what her mother was truly experiencing. That realization became her life’s work. More than 30 years later, Forrest is a dementia coach and founder of Through the Forrest, where she works directly with family caregivers. ... Forrest explains that dementia shows up differently in every person, and is much more than memory loss alone. Her approach rests on one idea: When families understand what is happening, have a plan, and feel supported, life can become less frightening and more meaningful for both the person living with dementia and the caregiver.

[Portugal] Ketamine for cancer-related pain in palliative care: A systematic review of clinical use and safetyJournal of Pain & Palliative Care Pharmacotherapy; by Catarina Vitorino-Afonso, Paulo Reis-Pina; 7/26Ketamine has emerged as an adjuvant for opioid-refractory cancer-related pain in palliative care, but evidence remains limited. [This study found that] ketamine was used mainly as an adjuvant. Many reports described reduced pain and/or lower opioid use, although certainty was very low and attribution was limited by polypharmacy and regimen changes. Intravenous infusions were most common, but subcutaneous, oral, and intranasal routes were also used. Intranasal ketamine showed pragmatic utility for breakthrough pain, while oral ketamine was described in ambulatory palliative care settings.

Deactivation of cardiac devices at the end of life: clinical and ethical challenges Current Heart Failure Reports; by Marie-Gabrielle Courtès, Fiona Ecarnot, Mathilde Giffard; 8/13/26 Device deactivation in patients with heart failure is an increasingly relevant clinical and ethical challenge as the use of cardiovascular implantable electronic devices expands. ... Deactivating implantable cardioverter defibrillators can prevent painful and unnecessary shocks at the end of life, which may otherwise prolong dying without improving quality of life. Multidisciplinary involvement, including palliative care consultation, is essential to support patient-centered decision-making and symptom management. This review synthesizes the latest evidence and consensus on device deactivation in heart failure, emphasizing the need for communication, initiated early in the disease course, as well as individualized care, and integration of patient preferences throughout the disease trajectory.Editor's Note: What Policies and Procedures does your organization have in place? What interdisciplinary education do you ensure for all IDG members regarding this challenge for patients, families, and legal representatives? This clinical and ethical challenges presents potentially horrific trauma for the patient and those present when the person is actively dying and dies. Clincial and legal knowledge, preparations, and communications, and documentation are crucial.

"It felt like throwing in the towel": Family caregiver perspectives on end-of-life decision making in chronic obstructive pulmonary diseaseJournal of Palliative Medicine; by Natalia Smirnova, Tivona Batieste, Sarah H Cross, Samir Jamdar, Catherine S Peterson, Camille P Vaughan, Dio Kavalieratos; 7/26Chronic obstructive pulmonary disease (COPD) has an unpredictable trajectory and high symptom burden, complicating end-of-life (EOL) decisions around place of death and hospice use. We conducted semi-structured interviews with bereaved caregivers of people with COPD who received pulmonary care at a U.S. academic center and died within 12 months. Fifty-six percent of decedents received hospice; 33% died at home. Caregivers described five themes: missed prognostic cues and poor communication; hospice as both loss and relief; home as ideal but hospital as default; financial influences on decisions; and mismatch between hospice and COPD needs. Caregivers identified a readiness gap driven by prognostic uncertainty, communication challenges, and financial constraints.

[Italy] Fever in a palliative care setting: Clinical insights and implications from a prospective observational cohort studyPalliative Medicine; by Stefania Cheli, Elena Angeli, Oscar Corli, Sofia Dinegro, Agostino Zambelli, Tania Carta, Romina Shazivari, Michaela Smolikova, Paolo Franceschi, Francesco Molà, Yara Silva Cruzeiro, Emilio Clementi, Andrea Gori; 5/26Fever is a frequent but complex symptom in adults with a limited prognosis, arising from multifactorial causes beyond infection. The study was conducted in an inpatient hospice palliative care unit within the Luigi Sacco Hospital in Milan, Italy (January and December 2024). Fever occurred in 40% of patients, with a median onset of 5.5 days after admission. In 39.7% of cases, fever was attributed to infections, mainly catheter-associated urinary tract infection. Its strong association with medical devices highlights the need for proportional, personalised interventions that primarily consider prognosis, symptom relief, and quality of life.