Literature Review

Economic value of unpaid family caregiver time following hospital discharge and at end of lifeJournal of Pain and Symptom Management; by Brystana G Kaufman, Wenhan Zhang, Sahar Shibeika, Ro W Huang, Ting Xu, Cory Ingram, Allison M Gustavson, Diane E Holland, Catherine Vanderboom, Courtney H Van Houtven, Joan M Griffin; 12/24Results: Of 282 Family caregivers, 94% were non-Hispanic White, 71% were female, 71% had a college degree, and 51% were in the workforce. Family caregivers of decedents (58%) compared to survivors reported significantly more caregiving hours per person-month (392 vs. 272), resulting in higher estimated economic value per person-month using opportunity ($12,653 vs. $8843), proxy ($5689 vs. $3955), and combined costing methods ($9490 vs. $6443). Conclusion: This study informs more complete economic evaluations of palliative care by estimating the economic value of unpaid caregiving. The high intensity of unpaid caregiving for people with serious illness, especially toward the end of life, should be considered when designing policies and interventions to support family caregivers. Better methods for approximating economic value are needed to address potential inequities in current valuation approaches.

Family caregivers deserve to be a valued part of the healthcare continuum MedCity News; by Cara McCarty Abbott; 11/20/24 Family caregivers are a critical part of the healthcare system. Not only are they part of America’s safety net, but they are also critical partners to hospice providers when caring for loved ones with serious illnesses or at end of life. With 53 million U.S. caregivers actively involved in healthcare decisions for their loved ones, enhancing support for these caregivers can contribute to patient clinical outcomes and improve a sense of well-being among families facing a difficult experience. ... When caregivers aren’t supported, it’s not only the people who suffer; it’s also the organizations that they most interact with during the caregiving process. ... Hospice providers cannot turn this tide alone. This complex, systemic issue requires a comprehensive approach. ...

How to keep loved ones in hospice care included during the holidays WHSV 3, Harrisonburg, VA; by Olivia Whitehouse; 11/14/24 The holiday season can be difficult to navigate when a loved one is in hospice care. Legacy Hospice in Fishersville said there are ways to keep them included in the holiday festivities. RN Clinical Director Sarah Campbell said you can move a loved one’s bed to the living room so they can be a part of the conversation. For example, if the patient can still speak, they may ask to make their favorite meal or recipe. “They are still included in that meal, even if they may not want to eat it or be able to get up to the table — they still feel part of the process,” Campbell said. Campbell said hearing is one of the last senses to go. Even if a hospice patient can’t respond to you, she said it is important to talk to them and you should refrain from talking about them like they are not in the room. 

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.

It's not just pumpkin spice time--it's time for the family conversation! Dunlap Bennet & Ludwig; by George Reilly; 11/13/24 “Quality family time” is a phrase often heard in the period from Thanksgiving to New Year’s, sometimes even with air quotes, to describe what many people believe to be a necessary, but not necessarily enjoyable, time of family togetherness. ... Whatever your perspective on this “quality family time,” chances are that for most of you, it was/will be a missed opportunity to discuss very important matters with your loved ones—namely what happens in the event of disability or death; who takes care of what; a parent’s (or grandparents, or your own) wishes on the end of life medical care and funeral/burial/cremation choices; your wishes on guardians for minor children; and other critical, but admittedly sensitive and gloomy topics. ...  Consider these statistics from surveys conducted by the Conversation Project: ... 92% of Americans say it’s important to discuss their wishes for end-of-life care, but only 32% have had such a conversation! [Click on the title's link to continue reading.]

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.

Startup Guaranteed looks to improve end-of-life care Healthcare Brew; by Cassie McGrath; 11/6/24 After losing her father, Jessica McGlory founded a startup to improve end-of-life care. In August 2019, Jessica McGlory got a call that her father had had a double heart attack and was admitted to a hospital in Chicago. As his health declined, McGlory became his caregiver and healthcare proxy. But she said she never got the opportunity to discuss her father’s end-of-life care or his wishes. “I thought it was going to be an opportunity to really focus on my loved one, but instead, [I] had to focus on everything else and really didn’t get the support [I] expected from the hospice,” she told Healthcare Brew. Hospice is palliative care that typically includes counseling, physical care, medicine, and equipment for patients with terminal illnesses. Two years later, despite having no previous experience in healthcare, McGlory decided to take action. In 2022, she launched Guaranteed, a New York-based hybrid end-of-life care startup that works to support people with terminal illness as well as their loved ones and caregivers. ... Guaranteed has raised $10 million to date and is looking to expand into three more states next year, she said.

Community carolers share love with Bartlesville's 'Santa' on his final journey home Oklahoma Association of Broadcasters - Bartlesville, Oklahoma; by Nathan Thompson; 11/9/24 He's been known as Bartlesville's very own Santa for more than three decades, and on Saturday night dozens of community members showered Ron Adams with the blessing of love and Christmas carols as he faces the final moments of his life.  Earlier this year, Adams was diagnosed with stage-four liver cancer. His health has rapidly deteriated and he is in hospice care at The Journey Home between Bartlesville and Dewey. Debbie Neece, a friend of the family, says she received a phone call from Adams' daughter, Lindsey, Saturday morning with a special request.  Neece made it happen as a fitting tribute to a Bartlesvile icon and his family. ... Saturday's love from the community gathering and singing more than 20 minutes of Christmas carols had a profound impact on Ron, his wife Debi and his daughter Lindsey. Lindsey came outside and in tears, thanked the gathered crowd. A small blessing of Christmas music. A large outpouring of love from the community. But not as large as Ron Adams' heart and his devotion to bringing joy as Bartlesville's Santa.

[England] Woman doing race for hospice that helped husband BBC News; Lorna Bailey and Andrew Dawkins; 11/4/24 A woman is taking part in a 120km (75-mile) race over four days through the deserts of Jordan for a hospice that helped care for her husband. Charlotte Rochenard-Taylor, from Warwick, said running became a way for her to cope with grief, after Jamie died from a brain tumour in June last year. She is participating in the Marathon des Sables to raise money for Myton Hospice, which has sites in Coventry, Warwick and Rugby. Ms Rochenard-Taylor said it was "just a way to keep alive, if that makes sense, getting again out of my comfort zone to just feel like fully alive". One of her husband's last wishes was to die at home, stated the runner, who made it her "mission for this to happen". She added: "Thanks to the Myton Hospice, the at-home team... that was made possible." ... "I [found] that running actually became for me a way to cope with the grief, just to get out there and just get the rage out and just... mental wellbeing really." Ms. Rochenard-Taylor, who broke her pelvis a few years ago, said the charity was close to her heart, and the race starting on Tuesday was an ideal way to support it.

National Partnership for Healthcare and Hospice Innovation celebrates National Hospice and Palliative Care Month National Partnership for Healthcare and Hospice Innovation (NPHI); 10/31/24 In honor of National Hospice and Palliative Care Month, NPHI also shines a spotlight on the true Care Heroes—the dedicated professionals and volunteers who provide compassionate care to those facing terminal or serious illnesses. Their dedication to ensuring comfort, dignity, and quality of life is the foundation of hospice and palliative care. These Care Heroes make a profound impact on the lives of patients and their families, offering essential support during some of life’s most challenging moments. “We celebrate and recognize the invaluable contributions of these Care Heroes—the extraordinary individuals who are delivering exceptional quality care each and every day,” stated Tom Koutsoumpas, CEO. “We invite everyone to join us in sharing their positive experiences of working, volunteering, or caring for those at the end of life.” “This November is a time to recognize the essential role of hospice and palliative care providers in our communities,” stated Carole Fisher, president. “We invite everyone to join us in spreading the word about the impact of these services and in celebrating the dedicated professionals who provide this critical care. To participate in National Hospice and Palliative Care Month, NPHI encourages everyone to join the conversation online using the hashtags #CareHeroes, #HAPCM, #HospiceCare, and #PalliativeCare. You can also explore our Public Outreach Toolkit for more guidance.

CNY Inspirations: Caregiving is redemptive Syracuse.com, Syracuse, NY; by InterFaith Works of Central New York; 11/3/24 I will carry him with me for my life as one of the greatest examples of caring that I ever met. I will be obscure on the details, but he cared for his wife, who was completely immobilized, with a degree of fidelity, creativity, and painstaking love that I have rarely seen and could only hope to imitate. He lived what Arthur Kleinman calls in his book of the same title, The Soul of Care. ... He says, “Caregiving, for me, at its deepest was redemptive. It redeemed me…. in caregiving, there is a common tug of war between the sometimes-bitter feelings that care is a burden and the more heartening certainty that no matter how burdensome, it is ultimately rewarding.” ... My friend never expressed that verbally, but I saw it lived as I watched him over the years through periods of anxiety, weariness, anger, hurt, despair, and through it all, intense, personal demanding caregiving. “And so, in the end, the soul of care pivots to care of the soul.” Inauspiciously, my friend took good care of his soul…and certainly helped mine.

How to celebrate veterans in hospice on Veterans Day 3HC, Goldsboro, NC; by 3HC; retrieved from the internet 10/31/24 Some served our country in foreign lands while others dutifully protected us on our home shores. All of them demonstrate commitment and courage, helping secure the rights and freedoms we so often take for granted. These brave men and women should be celebrated every day—not just on Veterans Day. ... Do you have a relative or loved one in hospice care who is a veteran? Read more to discover great ways to celebrate veterans in hospice on Veterans Day. ...

National Care at Home Month 2024: Celebrating Care at Home in November National Alliance for Care at Home (formerly NAHC and NHPCO); 10/31/24 National Care at Home Month celebrates and supports paid and unpaid caregivers and builds on the existing work of National Family Caregivers Month. Customizable templates are available now. ... The National Alliance for Care at Home brings together two legacy organizations – the National Association for Home Care & Hospice and the National Hospice and Palliative Care Organization – representing, advocating for, educating, and connecting providers of care in the home for millions of disabled, elderly, and dying Americans who depend on that care. ... To represent this strength in unity, the Alliance is introducing National Care at Home Month, an annual observance recognized each November to inspire outreach to communities, media, and policymakers, recognize the valuable contributions of provider staff and volunteers, and continue building awareness of the home care continuum. To this end, we are paying special attention to different types of care at different points throughout November.