Literature Review

Unity launches Guide that enhances quality of life for dementia patients and their caregivers The Chamber - Manitowoc County, De Pere, Wisconsin; Press Release; 6/20/24 In honor of The Longest Day Of The Year which is celebrated on June 20th to raise awareness and outshine the darkness of Alzheimer's disease, Unity, in partnership with National Partnership for Healthcare and Hospice Innovation (NPHI), announces the release of a new dementia care resources guide that will improve quality of life for dementia and Alzheimer’s patients, reduce hospitalizations, and ease the burden for families and caregivers. ... The new guide represents the best standards of care for mid-, advanced-, to end-stage dementia and was put together with the collective input of 100+ not-for-profit hospice, palliative care, and advanced illness care organizations. [Click on the title's link for more information, and to download the free guide.]

When your parents die: Becoming an adult orphan The Montecito Journal; by Deann Zampelli; 6/18/24 Shortly after I got married, my 64-year-old mother lost her battle with breast cancer. Seven years later my father joined her. The loss isn’t any less painful just because you are a grown-up. ... Many don’t realize that grief isn’t linear. We don’t go through a neat little phase, checking off each stage as we complete it. The famous (and somewhat debunked) five stages of grief introduced by Elisabeth Kübler-Ross in the 1960s (Denial, Anger, Bargaining, Depression, Acceptance) were from a study she did on the emotional states of patients who were dying. It was their stages she was referencing, not ours. ... I came to a frightening realization. ...  It suddenly dawned on me that my siblings and I were next in line to kick it. [Click on the title's link to continue reading.]Editor's Note: While serving in your hospice leadership roles, you experience the ongoing aging, changes and likely even deaths of your own family members, friends, and mentors. Do you, your hospice communications, and/or your grief services rely on the outdated "Stages of Grief" model? These "stages" opened the door in the 1960's for talking about death and dying, but became overpopularizd for surviving and healing after the loss. These have been replaced with extensive bereavement/loss/grief research, clinical best practices, and more. For expert information, resources, and bereavement professionals, examine www.adec.org,  the Association for Death Education and Counseling. 

Hope in oncology: Where art and science collide Medscape; by Sharon Worcester, MA; 6/12/24 Carlos, a 21-year-old, laid in a hospital bed, barely clinging to life. Following a stem cell transplant for leukemia, Carlos had developed a life-threatening case of graft-vs-host disease. But Carlos' mother had faith. "I have hope things will get better," she said, via interpreter, to Richard Leiter, MD, a palliative care doctor in training at that time. "I hope they will," Leiter told her. "I should have stopped there," said Leiter, recounting an early-career lesson on hope during the ASCO Voices session at the American Society of Clinical Oncology (ASCO) 2024 annual meeting. "But in my eagerness to show my attending and myself that I could handle this conversation, I kept going, mistakenly." ... Carlos' mother looked Leiter in the eye. "You want him to die," she said. ...Editor's Note: Click on the title's link to continue reading this insightful reflection and discussion about the importance of "hope." Engage your oncology/palliative/hospice chaplains (hopefully CPE trained and Board Certified) with your medical team members to explore this core belief in "hope." Alert: AI referrals for palliative and hospice care are increasing exponentially. Clinicians must be sensitive to the human dimensions and dynamics of "hope" (which shift and change), and not be driven just by technological data.

19 myths about dying people need to stop believing Million Dollar Sense; by Anuradha Supun; 5/29/24 

From theory to practice: Collaboration shows how law and healthcare work together in real life Iowa College of Law; 5/22/24 A recent workshop collaboration between the [Iowa] College of Law and College of Nursing gave students preparing for both professions an opportunity to learn more about legal and healthcare issues surrounding end-of-life decision-making. The two-hour event, “Navigating the Intersection of Law and Healthcare: An Interactive Workshop for Future Practitioners,” brought together students from the Estate Planning and Law & Policy in Action clinics and graduate students in the College of Nursing. Topics included Medical Powers of Attorney (Medical POA), Living Wills, and other decision-making considerations for critical health issues. Elise Fenton, JD Candidate (2025), said the workshop illustrated the difference between how advance directives like Living Wills work in theory versus how they may be utilized in practice. 

When families fight over a relative with dementia, it’s time to call in the mediator The New York Times; by Paula Span; 5/13/24 Trained negotiators can help families struggling with vexing elder-care issues.  The four adult children were in agreement. Their father, William Curry, a retired electrical engineer and business executive, was sinking deeper into dementia. ... [But their mother] remained determined to continue caring for her 81-year-old husband at home, despite the increasing toll on her own health. ... As the weeks passed, “we were really at an impasse,” [a daughter] said. “Do you override your mother?” ...  [Increasingly,] families seek elder mediation privately, before disputes land in court and imperil or destroy family relationships. [Continue reading for descriptions of how mediation differs from arbitration, from family therapy, and for cautions about this being "a fairly new field with no nationwide certification or licensing requirements."]Editor's Notes: Executive leaders, what community education and resources are you providing for Advance Directives? What family systems education and and problem-solving are you providing for your interdisciplinary team members and grief counselors? Family conflicts are inherent--in some form or fashion--with almost anyone needing dementia care, especially when paired with palliative or hospice care. (If in doubt, ask your seasoned, front-line professionals.)

Volunteering in hospice helps Macalester students contemplate death's mysteries up close MSN - Minneapolis Star Tribune; by Katy Read; 5/10/24 "You think it will never happen to you, that it cannot happen to you, that you are the only person in the world to whom none of these things will ever happen," author Paul Auster wrote about humans' difficulty confronting our own mortality. ... Auster himself died last month at age 77. ... How can humans fully grasp the inevitability of our own death? It's a tough question to answer, maybe close to impossible. Three Macalester College students who just finished a course called the Anthropology of Death and Dying don't have the answer. Their professor, who has spent much of his career studying death as an anthropologist and a former hospice nurse, doesn't have an answer. A hospice nurse doesn't have the answer. And a hospice patient with lung cancer doesn't have the answer, even knowing he soon will confront its reality firsthand.

Hudson Valley Hospice celebrates nurses everywhere for their life-changing work Townsquare Hudson Valley; 5/7/24 Hudson Valley Hospice is celebrating its nurses in all of their roles! From LPNs to registered nurses, nurse case managers to triage nurses, on-call nurses to nurse practitioners, they make a difference each moment of every day in their patients and their loved ones' lives. Hudson Valley Hospice is proud to call many of these heroes their own, with three of them being nominated for Hudson Valley Magazine’s 2024 Excellence in Nursing Awards: ... To Hudson Valley Hospice’s extraordinary nurses and nurses everywhere, thank you and Happy Nurses Month!Editor's Note: Hudson Valley Hospice effectively used the national nurses celebration to thank all nurses (their organizations and others), honor their persons receiving nursing excellence awards, promote community awareness about their hospice services, and recruit nurses for open roles. Bravo to you for this great communication!

Exploring grief: Cleveland Institute of Art student copes with loss through her paintings FreshWater, Cleveland, OH; by Karin Connelly Rice; 5/8/24 Maddie Cantrell, 21, and a painting major at the Cleveland Institute of Art (CIA), grew up in the small town of Traveler’s Rest, South Carolina, with her grandparents, Alaine and Jim Sosebee, living just around the corner. ... Now a rising senior at CIA, Cantrell has found her art to be an outlet for coping with the sudden deaths of her grandparents. The result of her effort her exhibit is, “Living with Grief,” four paintings that illustrate the experience of living with grief, at Hospice of the Western Reserve’s The Elisabeth Severance Prentiss Bereavement Center, ... “My work is centered around having to grow up without [my grandparents] and making a bridge between where I exist and where they exist,” Cantrell explains of her works. “... How would I speak to them if I could? Or, how would we have a conversation, even though they're not here?” ...

Families are often unaware of benefits of palliative hospice care, says retired oncologist KSMU Ozarks Public Radio; radio segment by Linda Regan; 5/5/24 In this episode of our local program Making Democracy Work, host Linda Regan speaks with returning guest Dr. Robert Carolla, retired medical oncologist and board member for Hospice Foundation of the Ozarks. Carolla discusses palliative hospice care and says that families often sign up too late to receive all of the supportive benefits. He says “death is a part of life” and explores common misconceptions associated with hospice care.

University of Texas club puts life's memories into book for people receiving hospice care Austin American-Statesman; by Nicole Villalpando; 4/27/24 "What would you like your legacy to be?" Galilea Dupree asks Bob Bell, as she and two other University of Texas students gather around the dining room in Bell's North Austin home. ... Bob, 92, has congestive heart failure. After three strokes and two heart attacks, he began receiving services with Hospice Austin in November. He is one of nine people in hospice who are having their stories told by UT students as part of the Last Writers club. The club works with Hospice Austin and Compassus hospice to identify people who would like to have their stories told.

Death is a part of life – so let's talk about itNow Then - A Magazine for Sheffield [UK], by Sam Walby; 4/17/24 The Sheffield Life, Loss and Death Festival takes place this May with a mission to break through taboos, awkwardness and anxiety about death and dying. Here's why it's important. Death is universal. We will all die and we are all likely to experience grief at the loss of loved ones. So why are we so squeamish about talking about it? ... The festival, which comes to Sheffield this May, uses all kinds of event formats and venues to engage people in the topic, from exhibitions and 'death cafes' to music performances and open mics.

Health Talk: Getting into a health care career The Barre Montpelier Times Argus Online, by Peg Bolgioni; 4/13/24According to the American Hospital Association, there will be a shortage of up to 3.2 million health care workers by 2026. America will face a shortage of up to 124,000 physicians by 2033 and will need to hire at least 200,000 nurses per year to meet increased demand, and to replace retiring nurses. ... The mission of Southern Vermont Area Health Education Center is to enhance community efforts to grow and sustain the health workforce in southern Vermont. One of the ways we do this is by delivering pathway programs that connect students to health careers. [Click the title's link to read about this event.]Editor's Note: How might your organization create similar career engagement and education in your community?