Literature Review

Odom co-authors American Cancer Society Caregiver Services GuideThe University of Alamaba at Birmingham School of Nursing, by Laura Gasque; 4/9/24To help meet the needs of the growing number of people caring for family members and friends with cancer, the American Cancer Society has released the guide “Developing Caregiver Clinical Services: A Toolkit for Cancer Centers and Staff,” co-authored by University of Alabama at Birmingham School of Nursing Associate Professor and holder of the Doreen C. Harper Endowed Professorship in Nursing, J. Nicholas Odom, PhD, RN, ACHPN, FAAN. According to the ACS, this toolkit is the first of its kind to provide the tools and resources that oncology leaders, clinicians and staff members can use to implement for caregiver clinical services.Editor's Note: Click here to download this free, excellent resource.

How to talk about death Maine Public Radio, by Jennifer Rooks and Cindy Han; 4/5/24 Talking about death is not easy. We'll discuss why stigma and discomfort can impede end-of-life conversations, for the person who may be nearing death as well as for friends and family members. We'll find out how to address the emotional and spiritual aspects of dying. And we'll discuss the more practical legal, financial and medical matters to handle before and after someone has died.Panelists: Julie Weiss, social worker, Hospice of Southern Maine; Dr. Paul Segal, nephrologist, assistant professor of medicine; helped create curriculum for end-of-life doula students, University of New England; Dr. Fernando Moreno, palliative care specialist; medical director, Hospice of Southern Maine

As America’s population ages, women shoulder the burden as primary caregivers PBS News; by Ali Rogin, Claire Mufson, and Satvi Sunkara; 3/30/24 Currently, 1 in 6 Americans is older than 65, a number that’s projected to rise to 1 in 4 by 2050. As older Americans’ needs for medical care and other support grow, women bear the biggest part of the burden of caring for them. Ali Rogin speaks with some women about their experiences and author Emily Kenway about the often unseen costs of caregiving. 

From doctor to family: Witnessing both sides of end-of-life care MedPage Today's KevinMD.com, by Jessica Bloom, MD; 3/27/24We all have those moments in medicine when we know that care has become more futile. Then we do everything in our power to educate, support, gently guide, and give permission to patients and families. There are moments that treating for a cure goes against our tenet to “first do no harm.” ... Specialists and his regular physicians sat with us, listened to my family’s questions, and offered kindness along with medical advice. They gently helped my siblings let go of futile searching for treatments. ...

The burden of getting medical care can exhaust older patients Navigating Aging, by Judith Graham; 3/27/24 [Ishani Ganguli] is the author of a new study showing that Medicare patients spend about three weeks a year having medical tests, visiting doctors, undergoing treatments or medical procedures, seeking care in emergency rooms, or spending time in the hospital or rehabilitation facilities. ... [Additionally,] more than 1 in 10 seniors, including those recovering from or managing serious illnesses, spent a much larger portion of their lives getting care — at least 50 days a year. ... When [treatment burden becomes overwhelming], people stop following medical advice and report having a poorer quality of life, the researchers found.

[Pediatrics] North Dakota Health and Human Services announces new pilot program CBS KX News, by Nathaniel House; 3/26/24 North Dakota Health and Human Services (HHS) has announced that family members who provide extraordinary care to either a child or adult enrolled in an eligible North Dakota (ND) Medicaid 1915(c) waiver may receive payments from the state through the new Family Paid Caregiver pilot program. State funding for the pilot program was approved from the passage of Senate Bill 2276 during the 2023 legislative session. Eligible ND Medicaid 1915(c) waivers include the Autism Spectrum Disorder Birth Through 17 Waiver, Children with Medically Fragile Needs Home and Community-Based Services Waiver, Children’s Hospice Home and Community-Based Services Waiver and the Traditional Individual with Intellectual Disabilities and Developmental Disabilities Home and Community-Based Services Waiver. 

The process of dealing with death is experiencing rebirth in a less-religious Pittsburgh Digital Daily; by Med St-Esprit, PublicSource; 3/24/24 Tanisha Bowman, of the North Side, a palliative care social worker for Butler Health System and a “death walker,” walks amongst the old graves in St. Mary’s Cemetery. ... From green burial to glass orbs containing ashes, the norms of funerals and burials are broadening as religious affiliation declines. ... According to a 2021 survey by Pew Research, 3 in 10 American adults are religiously unaffiliated. Data compiled by Pew Research about the Pittsburgh metro region found that 50% of adults in the region describe religion as “very important” and nearly 20% consider themselves not religious. Shifts in faith and worship mean families as well as businesses related to death and dying have had to alter their approaches.

My Mother is in Hospice Care Reformed Journal, by Doug Browser; 3/25/24 My 96-year-old mother entered hospice care a few months ago. For a while, it seemed as though she would go on forever, even though we knew that was unlikely. ... [Here’s] the thing, maybe the most striking thing I’ve learned while sitting with my mom over these last few months. Loss of memory can sometimes be a gift. ... I realize that there can be a kind of grace in not remembering a few things. ... We don’t have to go back and revisit any of it. We have this time together. ... And together we are a mom and a son, present in the moment, a moment with a surprising amount of grace. I never expected to get there.

Report: Alzheimer's and dementia caregivers total 840K in Florida, bear heavy burden NPR WMFE, by Joe Byrnes; 3/22/24The number of Floridians serving as caregivers for people with Alzheimer's and other dementias is an estimated 840,000, an increase of 13,000 in just one year, according to an annual report from the Alzheimer's Association. Caregiving takes a toll on families hit by the degenerative brain disease, but a new program from the Centers for Medicare and Medicaid Services could lessen that burden. ... [This] promising resource in the works is the Guiding an Improved Dementia Experience Model, an approach that includes the patient and caregiver. The GUIDE Model -- through the Centers for Medicare & Medicaid Services -- starts in July. 

Poem: I knew you had been sick for quite a while. I had no idea you were walking your last mile.The Andalusia Star News, by Vickie C. Wacaster, "a patient and hospice advocate for Aveanna Hospice"; 3/14/24. This poem is at the end of an article, "COLUMN: Hospice helps make most of all moments."I knew you had been sick for quite a while. I had no idea you were walking your last mile. Had I known your time was so near, Despite my fear, I would have talked more, touched more, and loved more. I asked about your care, your prognosis, your life, Why couldn’t they tell me? I was your wife. Or was I in denial? Did someone try to tell me? Did I refuse to hear? Could I not see? Did I refuse to accept? Your diagnosis and prognosis, did I reject? Was it because of unbelief? That death snatched you as a thief.We could have made the most of the time you had left, If only we had not been afraid of what we felt.

Why home care leaders are now banking on ‘Caregiver-First’ cultures Home Health Care News, by Patrick Filbin; 3/4/24 Over the last several years, a notable trend is emerging in home care: Top-tier companies are shifting their focus from prioritizing customers to prioritizing caregivers. This strategic move reflects a growing recognition of the critical role caregivers play, and aims to address persistent caregiver shortages.

How to help elderly parents from a distance: Tech can ease logistical, emotional burden USA Today, by Marc Ramirez; 2/28/24 As a neuropsychologist trained in developing technology for cognitively impaired older adults, Alyssa Weakley’s research at the University of California, Davis, made her acutely aware of the challenges of long-distance caregiving. ... Soon, she and her family found themselves in a position shared by nearly 6 million other Americans, acting as caregivers from a complicated and often distressing distance. According to a 2020 AARP report, long-distance caregivers represent more than 1 in 10 of the country’s estimated 53 million family caregivers, meaning they live an hour or more from their care recipient; on average, they live about 450 miles away. Editor's Note: What systems do you have in place to communicate with and support family members who live long-distance, who never have the opportunity to meet with any hospice team members in person? 

Proposed legislation would create tax credits for family caregiversHospice News, by Jim Parker; 2/23/24A bill to strengthen support for family caregivers is working its way through Congress. If enacted, it would create tax credits to help offset the financial burdens of caring for the seriously ill. ... The nation’s health care system is lacking in support for caregivers of the terminally ill, who are often left with a heavy financial and logistical burden. Without assistance or relief, these difficulties can impede access to hospice and other types of home-based care.