Literature Review

‘We don’t talk about death’: Winston-Salem journalist seeks to help people understand dying, deathbed visions Fox 8 WGHP - High Point, NC; by Bob Buckley; 5/29/24 There may not be anything that fascinates people more than death. It may be the thing many people avoid confronting the most. “In our culture, we’re pretty separated from death. And I don’t know the figures, but the vast majority … take place in hospitals. We don’t talk about death a lot in our culture,” said Phoebe Zerwick, a journalist based in Winston-Salem who recently wrote about deathbed visions for the New York Times Magazine. ... Zerwick became aware of the work of Dr. Christopher Kerr. ... “The biggest difference between hallucinations and these experiences is how the person is made to feel,” Dr. Kerr said. “Most hallucinations leave the person distressed and agitated and would be further confused. These experiences bring comfort. They bring meaning. They’re drawn from life. They really validate the life.” ... “I think the moral of the story is to be present and to be present with people when they are terminally ill. Be present when they’re dying,” Zerwick said.

The real cost of cancer: 49% of patients carry $5K+ in medical debt Becker's Hospital Review; by Ashleigh Hollowell; 5/28/24 ... Now, 47% of cancer patients accumulate debt as a result of their medical needs, The Wall Street Journal reported May 28. ... Some Americans are facing $38,000 or even more in medical debt, the Journal found. Additionally, more cancer patients are filing for bankruptcy, which one study linked to an 80% increased risk of dying. ... A 2024 survey of 1,284 cancer patients and survivors led by the American Cancer Society Cancer Action Network also found that: ...

Have a heart – caregivers need care, tooAmerican Heart Association; 5/14/24Living with a chronic medical condition after surviving a heart attack or stroke may come with additional health and personal care needs. Often survivors must rely on a family member or close friend to help. However, there’s a growing body of scientific research that shows people who serve as unpaid caregivers may not be getting the care they need to live longer, healthier lives, according to the American Heart Association.

Early palliative care perceptions by patients with cancer and primary caregivers: metaphorical languageBMJ Supportive & Palliative Care; by Elena Bandieri, Sarah Bigi, Melissa Nava, Eleonora Borelli, Carlo Adolfo Porro, Erio Castellucci, Fabio Efficace, Eduardo Bruera, Oreofe Odejide, Camilla Zimmermann, Leonardo Potenza, Mario Luppi; 5/13/24Methods: Data were collected through a pen-and-paper questionnaire on respondents’ perceptions of the disease, its treatment and their idea of death, before and after receiving EPC [early palliative care]. The data were analysed by identifying all metaphorical uses of language, following the ‘metaphor identification procedure’ proposed by the Praggjelaz Group.Results: Metaphors were used from a variety of semantic fields. EPC was described using spiritual terms, to indicate that this approach was instrumental in ‘restoring life’, ‘producing hope’ and making patients feel ‘accompanied’. The most recurrent metaphors were those referring to light and salvation; spatial metaphors were used to describe the treatment and the hospital as a ‘safe haven’ and ‘an oasis of peace’. 

LifeBio announces partnership with New York State Office for the Aging to capture the legacies of hospice patientsKFOL/KJUN HTV10; 5/9/24 LifeBio has launched a partnership the New York State Office for the Aging (NYSOFA) and the Association on Aging in NYS (AANYS) to rollout an innovative life story project to people in hospice care. This is the first initiative of its kind in the U.S. to be supported with funding from a state-level unit on aging. Using the LifeBio Memory app to record the voices of New Yorkers, each participating hospice patient will receive back a Life Story Book containing stories, memories and favorite photos to share with loved ones. Audio files will be saved privately and securely. LifeBio will also offer the option of journals for handwriting the stories. 

VA extends health coverage to family caregivers of patients who served McKnights Home Care; by Adam Healy; 5/6/24As recognition grows nationally of the needs of unpaid caregivers, family members and caregivers of veterans soon will have more options to receive care through the Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA).  Starting at the end of May, these caregivers will be granted new coverage for audio telehealth services, mental health care and [more]. ... Telehealth coverage is particularly important for caregiver beneficiaries living in rural areas, the VA noted.

Chesapeake Life Center offers monthly LGBTQIA+ drop-in grief support group Southern Maryland News Net; 5/6/24 Chesapeake Life Center will host a monthly drop-in grief support group for members of the LGBTQIA+ community. ... Grief is a hard and vulnerable time, and it is important to have safe spaces to process what we are going through. This group is intended for adult members of the LGBTQIA+ community who are grieving a past or approaching death. The group will be facilitated by a licensed queer therapist but will be loosely structured to offer an opportunity for participants to share their feelings and grieve with community.Editor's Note: Hospice & Palliative Care Today does not post upcoming, local hospice events, grief support groups, volunteer trainings, etc. However, we're posting this LGBTQIA+ grief support due to its unique need, with opportunities for replication in other hospices. 

The spectrum of end-of-life experiences: A tool for advancing death educationOmega; by Shared Crossing Research Initiative; 3/24 Abstract: Studies on end-of-life experiences (ELEs) suggest that caregivers and loved ones of dying patients also have ELEs, though these are rarely explored. This article introduces the Spectrum of End-of-Life Experiences (SELE) as a descriptive list of types of ELEs reported by all members of the care unit, including dying patients, their caregivers, and their loved ones. We applied SELE towards identifying ELEs reported by 143 caregivers and loved ones and successfully identified every experience. Interviews revealed that participants viewed their ELEs as profound communicative events, yet a substantial minority also reported struggling to name and process these experiences. We propose that SELE be included in death education to raise awareness about ELEs that can occur within the care unit, and we suggest that SELE has additional applications, including use as a prognostic aid in end-of-life care and as a therapeutic aid for bereavement support.

Millions of American kids are caregivers Now: ‘The hardest part is that I’m only 17’The Wall Street Journal; by Clare Ansberry; 4/27/24An estimated 5.4 million children help care for relatives, as families can't afford or find other in-home care. ... Leo Remis gos to high school, plays videogames, and helps take care of his disabled mom. ... More than 70% of young caregivers are caring for a parent or grandparent, according to a caregiving report. Many miss school, feel more isolated and worry about the future. Juggling homework with cooking and giving injections can be overwhelming and lead to anxiety.Editor's Note: Access to this article might require a subscription. Click here for alternate access.