Literature Review

‘The Last Ecstatic Days’ one day screening strives to teach the world how to die without fear Bangor Daily News, Bangor, ME; by BDN Community; 8/13/24 Hospice Volunteers of Waldo County invites Greater Waldo County to a single night screening on Tuesday, Aug. 20 at 7 p.m. Post-screening, there will be a Community Conversation with Hospice and Palliative Care Physician Aditi Sethi, MD and Director of the Center for Conscious Living & Dying/Hospice Volunteers of Waldo County’s Flic Shooter. Sethi, MD’s end-of-life palliative work is featured in the film. “The Last Ecstatic Days” focuses on a young man with terminal brain cancer (Ethan Sisser) as he sits alone in his hospital room. When Sisser starts live-streaming his death journey on social media, thousands of people around the world join to celebrate his courage. Still, he envisions more–to teach the world how to die without fear. To do that, Sisser needs to film his actual death. What unfolds next is a rarely-glimpsed perspective of how a community of strangers helps a young man die with grace.Editor's Note:  This movie has been featured on PBS. The Boston Globe describes, "... courageous end-of-life chronicle, which overflows with compassion." The Louisiana Mississippi Hospice & Palliative Care Organization shared this as a viewing and discussion at their July 2024 conference. For the trailor and more information, click here. 

Examining the relationship between rural and urban clinicians’ familiarity with patients and families and their comfort with palliative and end-of-life care communication

Letter: Closing Cottage of the Meadow [Hospice House] is a loss for allYakima Herald-Republic, Yakima, WA; by Lee Murdock; 8/13/24, with news post from 8/5/24 [Letter] To the editor — I was devastated to learn that Cottage in the Meadow, our local hospice facility, is ending hospice care. Both of my parents were fortunate enough to spend their final days in this serene and caring environment. The difference between the overrun hospital setting with its short staffing and the compassionate, individualized care at Cottage in the Meadow was stark. This facility provided invaluable support not only to those at the end of life but also to their families. As our population ages, the need for such services will only increase. Studies have shown that hospice care can reduce healthcare costs by up to 30% compared to traditional hospital care (Journal of Palliative Medicine). Additionally, hospice care significantly reduces hospital readmissions and emergency room visits, further reducing healthcare costs (JAMA). In a healthcare system with ample profit margins, ensuring access to hospice care is the least we can do. ...Editor's Note: This letter to the editor was in response to Yakima Herald-Republic's 8/5/24 article, "Yakima's Cottage in the Meadow will close its hospice house. It will reopen as a skilled nursing facility."

First Swiss hospice for terminally and critically ill children closes a gap in care NZZ; by Erich Aschwanden, Reidbach near Bern, Switzerland; 8/12/24 As many as 10,000 children and young people in Switzerland live with life-shortening illnesses. Because the state does not help support efforts to care for them in special facilities, private organizations are stepping in. ... Switzerland's first children's hospice is located in a converted farmhouse in Riedbach, a small hamlet on the outskirts of Bern. As idyllic as these surroundings may be, the fate of the children and their families who are taken in by the Allani Foundation is bitter. These are children and young people with life-shortening illnesses such as cancer, genetic defects or neurological diagnoses.

Heart disease, cancer remain leading causes of death in US Becker's Hospital Review; by Elizabeth Gregerson; 8/9/24 Heart disease and cancer remained the leading causes of death in 2023, according to provisional data released Aug. 8 by the CDC. Mortality data is collected by the National Center for Health Statistics National Vital Statistics System from U.S. death certificates, according to an analysis published Aug. 8 in JAMA. After a sharp increase in the rate of deaths from heart disease during the pandemic, the 2023 rate (162.1) reportedly was closer to pre-pandemic levels (161.5). The rate of deaths from cancer decreased from 146.2 in 2019 to 141.8 in 2023. Cause of death data is based on the underlying cause of events leading to death. Death rate is recorded as the age adjusted death rate per 100,000 deaths, authors of the JAMA analysis said.

Dr. El-Jawahri on the impact of palliative care on end-of-life care for AML and MDS OncLive; by Areej R. El-Jawahri, MD; 8/12/24 Areej El-Jawahri, MD, associate director, Cancer Outcomes Research and Education Program, director, Bone Marrow Transplant Survivorship Program, associate professor, medicine, Massachusetts General Hospital, discusses findings from a multi-site, randomized trial (NCT03310918) investigating a collaborative palliative oncology care model for patients with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS) receiving nonintensive therapy at 2 tertiary care academic hospitals. Patients in the study who received the palliative care interventions had a median of 41 days from end-of-life care discussions to death, compared with 1.5 days in the standard care group (P < .001). Additionally, patients who received the palliative care interventions were more likely to articulate their end-of-life care preferences and have these preferences documented in electronic health records, El-Jawahri begins. This documentation correlated with fewer hospitalizations in the final 30 days of life, she notes. Furthermore, palliative care recipients experienced QOL improvements and a trend toward reduced anxiety symptoms vs the patients who received usual care, El-Jawahri says. These findings underscore the necessity of integrating palliative care as a standard of care for patients with AML and high-risk MDS, El-Jawahri emphasizes.

Making your Customer Experience [CX] investment strategy work CMSWire [not to be confused with CMS=Centers for Medicare & Medicaid Services]; by Jeb Dasteel, Amir Hartman, Brian P. O'Neill and Marc Madigan; 8/12/24 Uncover the key elements of a successful customer experience strategy, from capability planning to aligning with core business objectives. ... Investing in a customer experience strategy is fraught with complications and feelings. Most of us in the world of CX are here because we believe that thoughtful CX spending will make an impact on the performance of our company.Editor's Note: This article is written for a much larger scope than our hospice and palliative readership. However, it highlights the importance of tying "customers' experiences" to the company/organization's core goals and business objectives. The Centers for Medicare & Medicaid Services' CAHPS Hospice Compare Scores [not to be confused with this CMSWire source] reflect the hospice "customer experience," from the perspective of the bereaved caregiver. While the CMS Hospice Compare site sorts these public information scores alphabetically (per location and organization), our newsletter's sponsor Hospice Analytics' National Hospice Locator sorts this same data by the highest scores, for the purpose of helping the public "consumer" find the hospice that will provide them with the best "customer experience."

New play focuses on Advance Care Planning for LGBTQ+ families and caregivers Hospice Foundation of America; by Lisa Veglahn; 7/29/24 Hospice Foundation of America (HFA) has added a new version of the short play “Lily” by award-winning playwright Bryan Harnetiaux to its AD (Advance Directives) Project, a collection of plays that dramatize the importance of advance directives. In the play, Jo visits her ex-wife, Lily, who is seriously ill. Jo is surprised that after years apart, Lily has asked to see her. She is even more surprised by Lily’s request that Jo serve as her surrogate decision maker when or if she cannot make healthcare decisions for herself. Hospice Foundation of America’s AD Project uses two-character, 10-minute plays featuring different relationships and settings. The plays are easy to produce and are intended for use by hospices, hospitals, and other community-based organizations wanting to engage audiences in discussions about advance care planning.The world premiere of the newest version of “Lily” was produced by Accord Hospice & Palliative Care in Sedona, AZ, in partnership with PFLAG Sedona, Unify Sedona, and the Sedona International Film Festival.Editor's Note: Click here for licensing information, to use this play in your community.  

Hospice market surge: Expected to hit $182.1 billion by 2033 Market.us Media; by Trishita Deb; 7/29/24 The global hospice market is projected to grow significantly from USD 72.8 billion in 2023 to around USD 182.1 billion by 2033, achieving a CAGR of 9.6%. This expansion is primarily driven by an aging population requiring increased palliative and end-of-life care. The demographic shift necessitates services that address chronic illnesses and provide compassionate care, predominantly offered by hospices. Additionally, technological advancements, particularly in telemedicine, facilitate broader access to comprehensive care, especially in remote areas. Interdisciplinary approaches in palliative care are also pivotal, involving collaborative efforts from doctors, nurses, social workers, and chaplains. This holistic method not only enhances the quality of care but also boosts patient and family satisfaction, key metrics in healthcare evaluations. 

Death can be a gentler exit for those enrolled in hospice care The Blade; by Kimberly Wynn; 7/28/24 A baby coming into the world needs a lot of care, and families prepare for that wailing, cooing bundle of life with cribs, and changing tables and advice from mothers-in-law. When baby formula was in short supply, family members branched out to scour retail shelves for the necessities. For those leaving this world, care is also needed, according to Victoria Palenske, branch director for Elara Caring, which offers home health and hospice services in the Toledo area. Such souls may need oxygen, pain medications, and spiritual counseling, as well as a hand to hold. “People deserve a lot of care at the beginning of life, but they also deserve care at the end of their life,” said Ms. Palenske, who began her career as a registered nurse whose focus turned to hospice services. “It is a calling.”Editor's Note: Thank you Elara Caring for this mission-oriented description of hospice care that gently addresses "dying," in contrast to some hospice materials that deny or completely divert purposes related to terminal illness, dying, death, or bereavement.  

Cultivating humility, making connections in a contentious world Tallahassee Democrat; by Rev. Candace McKibben; 7/27/24 The first time I remember hearing about “cultural humility” was some years ago when I served as a member of the Diversity and Inclusion Team at Big Bend Hospice. I recall reading an article by Silvia Austerlic, a Bereavement Manager and Hospice Latino community liaison, at Hospice of Santa Cruz County. She explained what is required to relate in the best interests of patients and families is not “cultural competence,” which is where our team had been focused, but “cultural humility.” “Cultural competence,” while it may be well-meaning, is a framework to help providers understand, appreciate, and work with individuals from diverse cultures. It is focused on gaining knowledge. “Cultural humility,” on the other hand, is focused on relationships. ... Yet another form of humility that seems critically important to me in our time is “religious humility.” This form of humility involves celebrating the inherent dignity of every individual, regardless of their religious affiliation.

5 evolving trends on end-of-life matters The Leavenworth Echo, Wenatchee, WA; 7/21/24 One of the most difficult conversations many people have in their lives involves the end of life. While often uncomfortable to think about or discuss with others, talking about and sharing end-of-life wishes should be a common occurrence. In fact, 91% of Americans believe talking about death and dying is healthy and normal, but 1 in 4 (27%) are uncomfortable actually doing it, according to a first-of-its-kind survey commissioned by the National Funeral Directors Association (NFDA), the world’s leading and largest funeral service association. With nearly one-third (31%) of survey respondents admitting they’re uncomfortable thinking about their own mortality, Remembering A Life, the organization’s online resource for accessing grief resources and funeral planning information, is offering a free downloadable guide, Start the Conversation, to help family and friends have meaningful conversations about loved ones and how they’d like to be remembered.

Making DEI matter in post-acute care HomeCare; by Jerry Farmer; 7/18/24 In today’s dynamic health care landscape, the importance of diversity, equity and inclusion (DEI) cannot be overstated. DEI represents policies and procedures that promote the representation and participation of diverse groups of individuals who encompass all ages, races, ethnicities, abilities, disabilities, genders, religions, cultures and sexual orientations. ... Here are some of the key factors our company focused to reach diversity, equity and inclusion milestones: