Literature Review

Terminally ill Illinois woman meets her idol, Jelly Roll NBC WETM 18, Elmira, IL; by Taylor Harris; 10/27/24 An Illinois woman battling terminal cancer fulfilled the dream of a lifetime Wednesday — meeting country music sensation Jelly Roll. Keita Miller, of Granite City, was diagnosed with a terminal illness in February 2022 and given just months to live. She has defined the odds, and now she’s been able to meet her musical hero, country star Jelly Roll. Her favorite Jelly Roll song is “Son Of A Sinner,” and she says his music has been a source of comfort during her illness. But more than just meeting the artist, Miller had one special request. ... The James Bess Foundation, a nonprofit that grants dreams to adults from 21 to 65 years old who are battling terminal illness, is making this dream come true.

It is better to look ahead and prepare than to look back and regret. ~ Jackie Joyner-Kersee

Family caregiver experience at heart of new project McKnights Home Care; by Foster Stubbs; 10/27/24 In healthcare, the needs of the patient are paramount. But for every patient there is at least one caregiver with needs of their own. Former first lady of the United States Rosalynn Carter understood this and established The Rosalynn Carter Insitute for Caregivers (RCI) to serve this underserved population. ... More than 40 years later, RCI continues Carter’s mission through its newest caregiver support resource. Using over two decades of research on caregiving combined with feedback from actual caregivers, RCI composed a series of 10 different Caregiver Profiles that reflect the unique and diverse experiences of family caregivers. These profiles revolve around the following:

The ‘perfect way to die’ in North Dakota CBS KX News, Bismarck, ND; by Brendan Rodenberg; 10/27/24 Death is not something people tend to look forward to at the end of their lives, but it is important to discuss nonetheless — and while many have ideas of how they would like to pass away, these vary immensely across America. This begs the question: How would North Dakotans like to spend their last moments?  ... [An insurance poll that surveyed 3,000 people from across the nation indicated]  that the perfect death for a North Dakotan would be to pass while hiking White Butte, the state’s highest point. ... The survey also delved deeply into other aspects of one’s last moments, including those surrounding them and what occurs after the moment of death. Below is a list of the most prevalent takeaways from this part of the study.

Mastering leadership: 6 experience-based qualities to align with a changing business worldForbes / HEC Paris Insights; by Marc Beretta, Daniel Brown; 10/25/24In today’s fast-paced world, effective leadership requires much more than traditional managerial skills. The dynamic nature of modern organizations, combined with the increasing complexity of global challenges, calls for a new type of leader - one who can navigate uncertainty, connect deeply with others, and foster a culture of trust and collaboration. Over the course of 20 years of coaching top executives globally, encapsulated in what we call the Six Leadership Landmarks we attempt to move beyond traditional leadership models, emphasizing vulnerability, self-awareness, and connection with others. Through this framework, leaders can not only guide their teams more effectively but also inspire transformation within themselves and their organizations... The six leadership landmarks we’ve developed over the years are awareness, adaptability, trust, vulnerability, kindness, and a shared vision. [Click on the link above for additional context and detail on these leadership landmarks.]

Palm Harbor family suffers flood after Milton, less than month after mother dies from breast cancer ABC WFTS Tampa Bay, FL; by Jessica De Leon; 10/26/24 One Palm Harbor family is gutting the first floor of their home, destroyed by flood waters after Hurricane Milton. Cali Gignac’s childhood home is not in a flood zone or near any large bodies of water, yet more than two feet of water entered her parents' townhome and destroyed everything just a month after her mother died. “We haven’t had a chance to sort her mementos. We haven’t had a chance to grieve her or anything. And now it’s like... everything is garbage.” Now, they are trying to save what they can, sometimes stopping to take a snapshot of notes or photos that they find. But as tears come, they quickly move on, knowing they have so much to do.“Our photo albums are just, like, melting.”Editor's note: Click here for a public service educational video, "Community Crisis and Grief," with a significant section devoted to coping with "normal" bereavement in the midst of a community crisis. Disclosure, provided by Composing Life Out of Loss, a sponsor of this newsletter.

Nonprofit organizes free home cleanings for cancer patients The Dallas Express, Dallas, TX; by Patti Villegas; 10/27/24 When facing a serious illness, even simple tasks can become overwhelming. However, one nonprofit organization is stepping in to help alleviate some of that burden for individuals with cancer. Cleaning for a Reason, founded in 2006, has facilitated free home cleaning services for more than 57,133 cancer patients in the U.S. and Canada, providing services valued at a total of more than $19 million. The non-profit organization partners with residential cleaning companies and community volunteers to “clean the homes of cancer patients to provide hope, relief, control, and cleanliness,” the group’s website states. The volunteers’ work not only enhances the patients’ physical environment but uplifts their spirits as well.

The usage of family audiobooks as a legacy for grieving children — an exploratory quantitative analysis among terminally ill parents and close persons Springer Nature Link - Open Access; by Gülay Ate, Michaela Hesse and Henning Cuhls; 10/25/24Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice. The family audiobook is a professionally supported, voluntary, free service that is unique in Germany. ... Conclusions: The family audiobook provides a valuable opportunity for terminally ill parents with dependent children under the age of 18 to tell their own biographical story, offer support to the bereaved in remembering, and preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents. Editor's note: While this service and this evaluation are located in Germany, it can be replicated easily with today's user-friendly technologies. First and foremost are patient empowerment, privacy, and ownership of these most personal messages. Examine using your spiritual care, social work, and/or grief counselors to facilitate this project.

Hospices: Boost quality assurance, training amid switch to HOPE, compliance experts sayMcKnight's Home Care; by Adam Healy; 10/22/24The new Hospice Outcomes and Patient Evaluation (HOPE) tool officially launches in less than a year, so now is the time to begin modifying operations and training staff to adapt to the new quality reporting framework, according to Jennifer Kennedy, vice president of quality, standards and compliance, and Kimberly Skehan, vice president of accreditation at Community Health Accreditation Partner. On Oct. 1, 2025, the HOPE tool will replace the Hospice Item Set for hospice quality reporting. For providers, HOPE demands more critical thinking than the legacy Hospice Item Set, Kennedy said Monday during the 2024 National Association for Home Care & Hospice conference in Tampa, FL. HOPE’s quality measures include hospice’s health outcomes, sociodemographic impacts, administrative performance and more. For some, adapting to HOPE might require internal Quality Assurance and Performance Improvement (QAPI) program upgrades.

New from MedPAC: 2024 Payment Basics series - HospiceMedPAC press release; 10/25/24MedPAC announces the release of the updated 2024 Medicare Payment Basics series. MedPAC's mission is to advise the Congress on Medicare issues, and part of that mission is providing clear and accessible information about how Medicare works. Payment Basics is a series of explainers on how Medicare's payment systems function. These "basics" are typically no more than 5 pages long and feature handy diagrams that visually depict how the payment systems calculate providers' payments. MedPAC produces "basics" for the major payment systems (20 in all), and updates the series once a year in the fall. The updated versions are now available here.Publisher's note: Hospice Payment Basics linked in the title above.

A moral code: Ethical dilemmas in medicine — three physicians face crossroads in patient care MedPage Today; podcast by Genevieve Friedman, Perspectives Editor; 10/25/24 We are back for another episode of our medical podcast, which we hope isn't really a podcast about medicine, but a podcast about life, death, dilemma, the challenges, and sometimes the joys of medicine. ... Now, medicine is complicated because a lot of times there aren't hard and fast rules ... One treatment isn't always right or wrong for someone. One surgery isn't always successful or unsuccessful, and one diagnosis isn't always correct. Decisions aren't black and white, they're varying shades of gray. So we come up with principles to help handle this -- codes if you will. But even those get a bit marred by complexity at times. As you'll hear in this episode of Anamnesis with the theme of "A Moral Code: Ethical Dilemmas in Medicine," one of our biggest codes is "do no harm." But what is harm? Who decides what harm is, what happens if we disagree?

Medicare Part D paid millions for drugs for which payment was available under the Medicare Part A Skilled Nursing Facility Benefit HHS Office of Inspector General; Report Highlights; 10/27/24 What OIG Found: ... On the basis of our sample results, for 2018 through 2020, we estimated that up to the entire Part D total cost of $465.1 million was improperly paid for drugs for which payment was available under the Part A SNF benefit. Of that amount, we estimated that approximately $245.4 million was for drugs that the medical records showed were administered to Part D enrollees during their Part A SNF stays.What OIG Recommends: We made five recommendations, including that CMS work with its plan sponsors to adjust or delete PDEs, as necessary, and determine the impact to the Federal Government related to the Part D total costs of $953,370 for drugs associated with our sample items for which payment was available under the Part A SNF benefit; work with its plan sponsors to identify similar instances of noncompliance that occurred during our audit period and determine the impact to the Federal Government, which could have amounted up to an estimated $465.1 million in Part D total cost; and provide plan sponsors with timely and accurate information, such as dates of covered Part A SNF stays, to reduce instances of inappropriate Part D payment for drugs for which payment is available under the Part A SNF benefit. ... CMS concurred with all five recommendations.

Finding purpose and joy through the gift of volunteering SMA News Today - Bionews, Inc., Pensacola, FL; by Jasmine Ramos; 10/24/24 My physical limitations don't define my ability to give back to others. Volunteering has given me more joy and meaning than I ever imagined possible. Living with spinal muscular atrophy (SMA) means I can’t move my own body, but that hasn’t stopped me from finding ways to move others. Whether supporting disaster relief efforts or creating meaningful moments for hospice patients, my work gives me a sense of freedom and fulfillment that transcends physical limitations. Every task, no matter how small, reminds me that we all have the power to make an impact. My body may not move independently, but through volunteering, my heart and spirit are constantly in motion, reaching out to touch the lives of others. ... Working with the hospice center brought a different set of rewards. I help create monthly newsletters that inform, comfort, and connect patients and their families.