Literature Review

Embodied decisions unfolding over time: a meta-ethnography systematic review of people with cancer's reasons for delaying or declining end-of-life careBMC Palliat Care, by Jessica Young, Antonia Lyons, Richard Egan, and Kevin Dew; 2/19/24Conclusions: Decisions about when (and for some, whether at all) to accept end-of-life care are made in a complex system with preferences shifting over time, in relation to the embodied experience of life-limiting cancer. Time is central to patients' end-of-life care decision-making. ... The integration of palliative care across the cancer care trajectory and earlier introduction of end-of-life care highlight the importance of these findings for improving access whilst recognising that accessing end-of-life care will not be desired by all patients.

The state of caregiving for 2024McKnights Home Care, by Lance A. Slatton; 2/13/24A significant discrepancy has formed over the past decade between the number of people needing care and the number of professional caregivers available. This was significantly exacerbated in 2023, with caregivers becoming more exhausted than ever. Whether due to financial constraints or the struggling economy, almost 1 in 5 Americans who were providing care in 2023 were going unpaid. 

Digital tool reduced burden, improved mood for cancer hospice caregiversCure, by Ashley Chan; 2/9/24Using a Symptom Cancer at Home (SCH) intervention significantly reduced caregiver burden, compared with usual hospice care (UC), according to a study from the journal Cancer.

Hospice of Montezuma announces program to help patients care for their petThe Journal, by Bailey Duran; 2/9/24Hospice of Montezuma announced a collaboration with Pet Peace of Mind to help local hospice patients take care of and make plans for ... their pets' care after their life ends. Hospice of Montezuma will partner with local pet care providers such as Denkai Animal Sanctuary to ensure that patients’ pets receive food, veterinarian care and exercise. The nonprofit Pet Peace of Mind, based in Salem, Oregon, partners with hospices and hospitals. ... “Hospice patients fare better when they get to keep their pets and know they are getting the love and attention they need,” Pet Peace of Mind said.

Study highlights financial burden of dementia on older adults, familiesGeorgia State University - School of Public Health, by Sam Fahmy; 2/7/24A team of researchers from the Georgia State University School of Public Health, the University of Washington School of Pharmacy and the University of California San Francisco analyzed data from a national sample of more than 4,500 adults aged 70 and older to arrive at what are thought to be the first comparisons of out-of-pocket expenses by dementia status and care setting. The researchers found that the median adult with dementia in residential facilities such as assisted living centers spent 97% of their monthly income on long-term care. People with dementia in nursing homes spent nearly 83% of their monthly income on long-term care.

I was my grandmother's caretaker before moving to the US to follow my dreams. She died 6 months later and I still feel guiltyBusiness Insider, by Erma Kershaw; 2/4/24... Grieving while living in a different country has been incredibly difficult. The moment I learned she'd died will stay with me forever. ... While my grandmother's passing didn't come as a surprise, the time since then has still been the most challenging period of my life. Grief is already a hard process for several reasons, but living 3,000 miles away from your loved ones makes it even harder. 

When a spouse goes to the nursing homeThe New York Times, by Paula Span; 2/5/24After moving his partner of 33 years to a memory care residence, Joseph Drolet, a retired lawyer in Atlanta, said his fear of what would happen to her if he died or became disabled has abated.

See how 5 families balance care and comfort in pediatric palliative careNational Geographic, by Taylor Sisk, photographs by Lynn Johnson; 2/1/24This medical team chooses to help families of children in palliative care prioritize quality of Life over taxing procedures and treatments. Our photo essay offers a glimpse of how they make the most out of life. ... [Interviews and photos are with the] Division of Palliative Medicine and Supportive Care at UPMC Children’s Hospital of Pittsburgh. ... The goal of this pediatric hospice program is clear: Put family first.Editor's Note: Note this source, National Geographic. Where do these photos and stories "take" you? I am grateful for Hospice of Louisville's (now, Hosparus) first hospice pediatric program in the U.S. I served on our Pediatric Care team for 4 years, and was forever, profoundly changed by knowing these children and their families.

Caregiver charged in deathDouglas Budget, by Matt Adelman; 1/24/24A caregiver has been charged with causing the death of her mother ... earlier this month. Central Wyoming Hospice and Transitions Center was present at her passing and notified Converse County Coroner Ross Gorman, who then notified Converse County Sheriff’s Investigator Ben Peech because the alleged actions leading to her death occurred on the family ranch near Douglas.

A psychologist offers advice on 'being there' for aging parentsForbes, by Mark Travers; 1/22/24As our parents age, we find ourselves on a challenging emotional journey, one that often remains unspoken but deeply felt. It’s the journey of anticipatory grief, a complex mix of emotions and thoughts that arise as we witness our parents becoming older, weaker and more frail. This concept, often overshadowed by post-loss grief, is equally devastating.

The challenges facing male caregiversNext Avenue, by Sophie Okolo; 1/23/24When business owner Mark Horst (not his real name) of Pompton Plains, New Jersey, first found out his wife of 37 years was diagnosed with Alzheimer's, he didn't know what the journey would entail. Of all caregivers in the United States, 16 million, or 40%, are men. Of these men, 63% identified as primary caregivers. 

New dementia-focused payment model emphasizes caregiver supportHospice News, by Holly Vossel; 1/18/23Without family caregivers, most hospice and palliative care patients would be unable to receive care in the home. Now, some emerging payment models are including caregiver support as a key component. 

Man with cancer once wanted assisted suicide, but was glad he chose natural death insteadLive Action, by Cassy Fiano-Chesser; 1/15/24“In our last moments, when he was awake, I sat on his bed and sang to him — Joni Mitchell’s Both Sides Now. He had watched her sing it at the Isle of Wight pop festival and it was a magical memory he had relived with us.