Literature Review

Home … where we all want to be The Journal; Dr. Sarah Phillips, Medical Director Hospice of the Panhandle; 1/12/25 Two days before Christmas, I arrived at the home of a patient who had been recently admitted to Hospice services. ... [Story of the patient being on a ventilator in a hospital.] This courageous and self-determined woman expressed the desire to be free from pain, suffering, and the complications and progression of her disease. Knowing that the ventilator was life-sustaining and essentially breathing for her, she made the decision to stop it. To ensure her comfort during discontinuation of the ventilator, the hospice team was present before, during, and after the procedure. Medications were used to ease shortness of breath, pain, and anxiety. ... “It’s a Wonderful Life” was playing on the TV, the Christmas tree was lit. I looked over and see the daughter wiping away her mother’s tears. Each reassured the other that everything will be OK and that they are at peace with this decision. As the medications took effect, the patient drifted off to sleep. The ventilator was stopped. Next, something happens that I will never forget. The daughter leans in and whispers to the patient, “Mom, the ventilator is off now, you are back in total control. This was profound to me on many levels. It certainly spoke to the power and importance of autonomy, the ability to make independent decisions that are aligned with one’s values and goals. ... Despite working in end-of-life care for over a decade, I still have these moments of being overwhelmed by the human spirit.

[Italy] Features of the nurse-patient relationship: Insights from a qualitative review using artificial intelligence interpretationCurrent Oncology; Elsa Vitale, Luana Conte, Roberto Lupo, Stefano Botti, Annarita Fanizzi, Raffaella Massafra, Giorgio De Nunzio; 12/24This qualitative literature review explored the intersection of art, creativity, and the nurse-patient relationship in the context of oncology nursing. It delved into the perceptions and reflections of nurses as captured by Generative Artificial Intelligence (GAI) analysis from two specialized nursing databases. The analysis revealed profound considerations regarding the role of nurses in oncology and palliative patient care. Nurses acknowledged the spiritual dimension through religious and spiritual practices, while emphasizing authentic presence and empathic communication. The insights from the GAI interpretation underscored the significance of empathy, creativity, and artistry in nurturing meaningful nurse-patient connections. 

[United Kingdom]  'My son died at 24 - now I'm doing his bucket list' BBC News; by Adam Eley and Alison Holt; 12/16/24 Alex Spencer's son Declan - who had Duchenne muscular dystrophy - died last year at the age of 24, and she admits she has still not gone a day without crying. "I think society has a misconception that a carer gets their life back [when a loved one dies]," she said. Declan had drawn up a bucket list but died before he could finish it. Now Alex, who wants to raise awareness of the difficulties disabled people face in getting the right care, is taking up the challenge - including visiting Paris, getting a tattoo Declan designed and taking his adapted van around a famous German race track.

Veteran’s body sent across state lines without family’s knowledge USANews.net; by Michael Carter; 12/17/24 In a shocking turn of events, Karen Wandel received a distressing message last year that her father, Libero Marinelli Jr., had passed away over five months earlier in a South Carolina hospital. What came as an even greater shock was the revelation that his body had been sent to be used for medical research without the knowledge of his family. This troubling incident sheds light on the complex and often unregulated practices surrounding the use of unclaimed bodies in the healthcare industry. ... The treatment of Marinelli, a former Army service member entitled to burial in a veterans’ cemetery, underscores the ethical dilemmas surrounding the supply of unclaimed bodies for medical research. Despite widespread acknowledgment of the unethical nature of this practice, it continues to persist due to the healthcare industry’s demand for human specimens and local officials’ struggles with the rising number of unclaimed bodies without next of kin.Editor's note: This demonstrates yet another example of the shocking story that received extensive national network news (and that we posted 9/17/24), "As families searched, a Texas medical school cut up their loved ones." 

'A blessing': Hospital beds find new homes in families who had been praying for them Austin American-Statesman, Austin, TX; by Nicole Villalpando; 12/13/24 Ron McDaniel had been trying to find a place for the hospital bed both his dad, Robert, and brother, Gary, had used in the assisted living facility where they were before they died. His father was a Navy veteran who was burned over 30% of his body during World War II. His brother had severe brain damage from a car accident in 1976 and was a quadriplegic. The electronic hospital bed with the extra comfortable mattress and the trapeze bar needed a new home. Ron McDaniel wanted it to go to a veteran or a veteran's family because it originally came from the Veterans Affairs, but he tried organization after organization with no luck. Meanwhile, Sandra Daniels was in desperate need of a hospital bed for her mother, Bertha Woodward, 87, who has heart failure, problems with her kidneys and limited mobility caused in part by neuropathy in her feet. Daniels could not afford a hospital bed but had been trying organization after organization for a year and came up empty. She had recently called AGE of Central Texas to see if they might have a hospital bed. ...Editor's note: Organizations who helped include 26th Statesman Season for Caring, Austin Palliative Care, ATX Firefighter Moving, AGE of Central Texas.

Stillwater Hospice hosts month LGBTQ+ grief group Northeast Indiana Public Radio, 89.1 WBOI, Fort Wayne, IN; by Ella Abbott; 12/5/24 Stillwater Hospice has a grief support group for those in the LGBTQ+ community, offering a safe, affirming space to open up about the challenges of loss. ... The group was started in 2022, following the opening of the Fort Wayne Pride Center downtown. Stillwater director of communications Bonnie Blackburn-Penhollow said people in the LGBTQ+ community can have additional stressors added onto their grieving. “They may not feel like they can have grief, or express their grief, if their family is not approving," she said. "They need to be able to talk to people who understand what those kind of constrictions on life are like.” The goals of the group are to create coping strategies for navigating grief, build resilience while honoring loved ones and address the unique experiences and challenges faced by LGBTQ+ individuals while grieving.

How to support loved ones experiencing cognitive decline while securing their financial well-being Nasdaq, Peronsal Finance; by Deanna Ritchie; 12/6/24 Supporting a loved one with cognitive decline can be one of life’s most challenging challenges. Those with cognitive impairments, such as dementia or Alzheimer’s, often need to be emotionally resilient and make practical adjustments. However, proactive financial planning to secure their well-being is frequently overlooked. The reason? The Wall Street Journal reported that those with undiagnosed memory loss are prone to significant financial declines. Researchers at the University of Michigan found that people without knowledge of their memory problems lost an average of $31,000 in net worth, while people with knowledge lost $5,400. Keeping this in mind, here’s a guide for providing compassionate care while protecting their savings and financial stability. [Click on the title's link for more.]

Washington Paid Family and Medical Leave & Job Protection - Final Legislative Report University of Washington, Daniel J. Evans School of Public Policy & Governance; Lead investigator Heather D. Hill, MPP, PhD, with Tom Lindman, MPP, Diane Rucavado, MPA, and Elizabeth Ford, JD; 12/1/24 This research was funded by ESSB 5187. Additional support for data access and analyses for this research came from the UW Data Collaborative funded by the UW Population Health Initiative, UW’s Student Technology Fee program, the UW’s Provost’s office, and Eunice Kennedy Shriver National Institute of Child Health and Human Development research infrastructure grant, P2C HD042828 to the Center for Studies in Demography and Ecology at the University of Washington. The content is solely the responsibility of the authors.

Addressing barriers to advance care planning by adults with advanced cancers Regenstrief Institute, Indianapolis, IN; by Shelley Johns, PsyD and Susan Hickman, PhD; 11/25/24 In one of the first studies to test the utility of mindfulness to support advance care planning by adult cancer patients and their family caregivers, researchers from Regenstrief Institute and Indiana University have found that mindfulness showed promise in improving quality of life and advance care planning outcomes in patients and their family caregivers coping with advanced cancer. ... Mindfulness emphasizes paying attention to the present moment with an attitude of openness, compassion and interested curiosity accomplished through meditation and other exercises to manage stress. “Mindfulness is about noticing what’s here so we can choose the wisest response and hopefully be less emotionally reactive,” said Dr. Johns. “Mindfulness practices help individuals increase their mindfulness muscle, so to speak. Anything that we do in our life ... can be done with mindful focus, with mindful attention."

Your children or spouse might not be the best power of attorney — what you can do about it Medical Economics; by Howard Enders; 11/25/24 It’s easy to assume that your spouse or children will be the most suitable candidates for this role, but that isn’t always true. Family members may be emotionally compromised or lack the expertise needed to handle complex medical or financial decisions. So, how can you ensure that your health, finances and legacy are protected? Let’s explore the key elements of estate planning, including setting up the right power of attorney, maximizing savings for future medical expenses and preventing unnecessary financial burdens on your loved ones. ... [Click on the title's link to continue reading.]

Hazel Dell couple face manslaughter charges in death of relative, 87, in their care The Columbian, Clark County, WA; by Becca Robbins; 11/14/24A Hazel Dell couple are facing charges of manslaughter and criminal mistreatment for the 2022 death of an 87-year-old relative who was under their care. ... In April 2022, state Adult Protective Services referred a report to Clark County sheriff’s detectives about the March 18 death of Marilyn Rogers at a Longview hospice facility. The woman had lived with Joel and Kathryn Rogers, her son and daughter-in-law, at their apartment before her death, according to a probable cause affidavit. ... Emergency room staffers noted Marilyn Rogers had multiple ulcers and pressure wounds that appeared to be infected. She also showed signs of dehydration and malnourishment. Blood work showed she also suffered from sepsis due to infection. ... Doctors recommended Marilyn Rogers be placed in hospice, and once she was, staff said Kathryn and Joel Rogers never visited her. Hospice staff said they struggled to get in touch with the couple for the roughly 10 days Marilyn Rogers resided there, the affidavit states.

Meals on Wheels substantially reduces risk of senior hospitalizations: report McKnights Home Care; by Adam Healy; 11/8/24 Home-delivered nutritious foods programs can help keep seniors out of the hospital and reduce their feelings of social isolation, according to a new report by Meals on Wheels and home care technology firm WellSky. The report examined how Meals on Wheels programs helped seniors recover after being discharged from a hospital stay. Each meal delivery also involved a social determinants of health assessment, which allowed Meals on Wheels staff to engage with participants and gauge their wellness and safety. After 30 days of the program, the researchers observed an 85% decrease in hospitalizations among participants. Approximately 98% of meal recipients said that Meals on Wheels helped their recovery, and 61% said it lowered their feelings of social isolation.Editor's note: While we know hospice patients experience a significant decline in appetite, the person's changing needs for nutrition continue. Pair this data with several recent articles we've posted regarding seniors' struggles compounded by living alone, isolation, and depression. We invite you to explore this educational/support video for caregivers/families of persons experiencing serious illness, palliative, or hospice care: Small Words - Big Meanings: EAT. Disclosure: Composing Life Out of Loss is a sponsor of our newsletter.

It takes more than love to care for a loved one Tri-Cities Area Journal of Business; guest column by Jason Erskine, AARP; 11/5/24 Chances are, if you aren’t a family caregiver, you know someone who is. Every day, more than 820,000 Washingtonians help their parents, spouses, siblings, grandparents, neighbors and other loved ones to live independently at home – where they want to be. November is National Family Caregivers Month, a time to highlight the important work these folks do. But simply thanking them isn’t enough. ... AARP and United Way have teamed up to connect caregivers with trained, compassionate people in your community who can help you find AARP caregiving resources and more. It’s called 211, it’s a free service, and you can talk to specialists who can help you find local resources for caring for your loved one … and for yourself too. ... AARP Washington is here to help with information and resources to support and connect caregivers. Go to: aarp.org/caregiverswa.