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?"

Palliative care researchers use qualitative data to understand the full picture of patients' lives St. Jude Research; by Heather Johnson; 8/26/25 The central goal of palliative care is to provide comfort, relieve suffering and improve the quality of life for those dealing with serious illnesses. That care is interdisciplinary. It must be. Quality of life relates to physical, social, emotional, spiritual and psychological needs. Addressing those needs requires teamwork from physicians and clinicians in a range of disciplines. ... Palliative care studies often use mixed methods approaches to capture the full picture of what can be subjective outcomes. For example, scales and surveys may provide a foundation for assessing symptom relief, while qualitative research, such as patient interviews and focus groups, helps researchers understand the meaning behind the numbers.  Editor's Note: Yes. Measures for hospice and palliative success and growth are more than dollar amounts and the number of locations. Pairing qualitative research with quantitative data, researchers and leaders must seek to "understand the meaning behind the numbers." Ongoing, be sure to explore our newsletter's Saturday issues for relevant, timely evidence-based research articles--quantitive and qualitive data--to improve the care of persons who needing hospice and palliative care.

Social relationships and end-of-life quality among older adults in the United States: The impacts of marital, kinship, and network ties The Journals of Gerontology; by Kafayat Mahmoud, Deborah Carr; 7/25We examine marital status differences in recent decedents’ end-of-life care and gender differences therein, and the role of other social ties (children, siblings, network members) in influencing the quality of end-of-life care. Divorced decedents fared poorly on multiple outcomes, being less likely than married or widowed persons to receive excellent care and to have personal care needs met. Divorced and widowed decedents were less likely to receive respectful treatment relative to married decedents. We found no significant gender differences in these patterns. Persons with more siblings and network members had superior pain management. Hospital patient advocates could also aid those who lack close kin at the end of life.

Sovereign Hospice highlights nutrition's role in hospice home care services News Channel Nebraska (NCN), reprinted from Aubrey, TX; Press Release; 8/8/25 Eating becomes more than a necessity during serious illness—it becomes a part of daily care that supports comfort, strength, and emotional connection. At Sovereign Hospice in Aubrey, Texas, nutrition is integrated into the services hospice offers, especially for patients receiving hospice at home services. The goal is to use food as a gentle tool to improve quality of life. Serious illnesses can change how patients eat. Appetite loss, difficulty swallowing, and taste changes are common, but they can be managed through small adjustments. 

The heart of transformation: People, purpose and progress at City of Hope Modern Healthcare; by City of Hope; 7/14/25 As chief transformation officer at City of Hope, one of the largest and most advanced cancer research and treatment organizations in the U.S., Debra Fields has spent nearly a decade guiding the organization’s evolution. In this conversation, Fields shares her perspective on what it takes to lead meaningful transformation in healthcare including the power of vision, the importance of culture and the responsibility leaders have to care for both their people and themselves.

How Compliance Management Systems help ensure business efficiency Enterprise Talk; by Apoorva Kasam; 7/22/25 With changing rules and regulations, businesses can’t afford to leave compliance to chance. A robust compliance management system (CMS) helps meet regulatory, legal, and internal policy requirements.

Family first: Embracing milestone achievements in pediatric care Carolina Caring, Newton, NC; Press Release; 7/15/25 ... Cardinal Kids [recently] became the first hospice organization in North Carolina to receive CHAP’s Pediatric Care at Home Certification. This milestone affirms what our patients and families already know: our program delivers care that is not only clinically focused, but also family-oriented, deeply personal, and rooted in hope. For the Cardinal Kids team, seeking the CHAP Pediatric Care at Home Certification wasn’t about achieving something new—it was about sharing the best practices we deliver to every patient, every day. As Cardinal Kids Director Emily Scholler explained, “The benchmarks CHAP presented were already in place at our program. Why not show CHAP how great this pediatric program is?” As part of the CHAP preparation process, our team assessed, developed, and showcased a model of care that’s always been central to who we are. We presented this model to CHAP surveyors as “A Focus on L.I.F.E.”

HOPE Tool Anxiety, Part II: From planning to practice Teleios Collaborative Network (TCN); podcast by Melissa Calkins; 6/30/25The countdown has begun. With October 1 on the horizon, hospice teams across the country are deep into training and testing—but preparation alone won’t guarantee success. The shift to HOPE isn’t just operational; it’s cultural. And real readiness goes far beyond timelines and task completion. It demands that every clinician, across every shift and care setting, understands what’s changing and feels confident in how to respond. This is the critical moment when planning must translate into practice—because once HOPE is live, the margin for error disappears.

Recommendations for palliative care program standards Center to Advance Palliative Care (CAPC); last updated 5/29/25CAPC has synthesized the NCP Guidelines into an operational summary for payers and policymakers to use in credentialing palliative care providers or informing minimum program requirements. These recommendations call for: an interdisciplinary team with 3 or more essential clinical disciplines: physician, advance practice provider, nurse, social worker, spiritual care professional and a child life specialist for programs serving children. One or more prescribers must have specialty certification in palliative care with others documenting some specialty training. PC services must include Comprehensive patient assessments, Pain and symptom management, Documented conversations about condition, treatment options, and goals of care, Psychological, social and spiritual support, Patient and family/caregiver education, and Coordination with behavior health and community health resources, and Development of a crisis intervention plan. The recommendations also specify 24/7 access to a prescribing clinician, clear discharge criteria, and routine evaluations of program quality.Guest Editor's Note, Ira Byock: These new recommendations from CAPC are timely and important. Building from the NCP Guidelines, CAPC is providing a framework for developing formal standards. That task is urgent given the pressures programs are under to reduce staffing, limit hours of service, and scope of services. I appreciate inclusion of crisis intervention planning, which should be a critical part of every palliative plan of care. The recommendations are strong, yet the statement’s wording is hesitant in tone. CAPC has the organizational stature to issue explicit minimum specifications for programs that purport to deliver palliative care. Health plans, payers, referring providers, and patients deserve assurance that such minimums are met or exceeded. CAPC has taken a significant step in the right direction.  

Hospice visits and perceived hospice quality among Assisted Living residents Journal of the American Geriatrics Society; by Wenhan Guo, Shubing Cai, Yue Li, Brian E. McGarry, Thomas V. Caprio, Helena Temkin-Greener; 5/19/25 Background: Hospice services are widely used by assisted living residents at the end of life, yet concerns exist about the adequacy and quality of hospice care in this setting. Conclusions: Higher frequency of hospice staff visits was associated with better perceived hospice quality. Policies supporting greater hospice staff engagement, including nonclinical staff, may enhance end-of-life care experiences for assisted living residents.

Quality measure considerations for pediatric palliative and end-of-life careAmerican Journal of Hospice and Palliative Medicine; Hannah Hommes, MSN, RN; Diane Forsyth, PhD, RN; April Rowe Neal, PhD, RN; 3/25 There is an emerging need to provide high-quality pediatric palliative care and end-of-life care to children, adolescents, and young adults with life-limiting illnesses. The aim of this literature review was to explore current quality measures utilized in pediatric palliative care and end-of-life care among pediatric patients with life-limiting illnesses within the conceptual framework of Comfort Theory. Emergent themes among quality measures were categorized into 7 domains: (a) Alleviation of distressing symptoms, (b) Structures and processes of care, (c) Health care utilization, (d) Location of death and bereavement care, (e) Patient and family experiences, (f) Psychological and spiritual care, and (g) Cultural, ethical, and legal considerations. These domains support the physical, psychospiritual, sociocultural, and environmental contexts of Comfort Theory. Quality measure research, development, and standardization should focus within the 7 domains identified for the promotion of comfort, equity, and accessible care.

CMS releases HOPE Guidance Manual (V. 1.01) and TablesCenters for Medicare and Medicaid Services (CMS); by CMS; 4/22/25On April 22, 2025, CMS released the HOPE Guidance Manual (V. 1.01) and connected tables. Providers can use v1.01 for HOPE planning, as this is considered final before HOPE implementation. Also note that earlier this month, the final HOPE data specs have also been released, helping software developers to finalize their HOPE software for testing in the coming months.

Research brief: Medicare Advantage Special Needs Plans linked to use of inferior hospice carePenn LDI - Leonard Davis Institute of Health Economics; 3/11/25 Beneficiaries of Medicare Advantage special needs plans are significantly more likely to use lower-quality hospices than beneficiaries of other Medicare plans. These disparities may result from the geographic availability of high-quality hospices or the referrals that beneficiaries receive from their plans’ contracted hospitals and nursing homes. The results support incentivizing referrals to high-quality hospices and improving consumer information about hospice quality.