Literature Review

'Dear God, I need help on this one': How a prayer from Hildegard House's founder was answered ABC News WHAS-11, Louisville, KY; by Doug Proffitt; 2/27/25 Up from the dirt of an 1800's camelback style house on Story Avenue, in Louisville’s Butchertown neighborhood, Karen Cassidy has a plan. "We’re standing on the original dirt floor of the house, that’s the way they built things," she said. She's the former nurse who founded the Hildegard House 11 years ago. Hildegard is a place for the terminally ill to die in peace. With three private bedrooms and around the clock care, it’s a peaceful haven for people who have no home, or loved ones to care for them, so that they may die with dignity.  ... It is funded successfully and solely by both private donations and foundations. Now, in the new space, the plan is to build a refuge called the "Center for Care Giver Education" at the Story Avenue location. “This is for caregivers that are at home trying to maintain their loved ones at home," Cassidy said. ... At the new center they will teach families the basics. ... The owners of the historic Story Avenue house helped by cutting her a deal. She says they told her they would sell it to her $100,000 less than what they put it on the market for. Donations from foundations helped her buy the house with cash. But then, she got estimates for the renovation and restoration totaling $450,000. “I said 'dear God, I need help on this one,'” Cassidy said. Then God, from that prayer, appeared in a most modern way. ... “Two weeks later I got an email from an attorney who said, ‘Can you meet me for lunch? Somebody has left their estate to Hildegard House,'" she told WHAS11 News. "It was $450,000. That did it!” The out-of-the-heavens donation means they are funding the renovation, top to bottom with cash. Nothing will be owed. Cassidy later learned why that money came her way. “We had cared for someone’s mother and they were so grateful,” she said. Editor's note: I am honored to serve on the Board of Directors of the Hildegard House. I continue to be amazed at the profound care and superb systems envisioned, implemented and moved forward by Karen Cassidy, her staff, 80+ volunteers, the Board, and community support.

“You sure feel like you’re alone, kind of flailing away out there”: Family caregiver perspectives of caring for an individual with glioblastoma multiformeCambridge University Press; by Christy Muasher-Kerwin, Abby Baumbach, Yujun Liu, M. Courtney Hughes; 2/25Glioblastoma multiforme (GBM) is the most common and aggressive form of brain cancer... Nineteen current and former family caregivers for individuals with GBM participated in semi-structured interviews from October 2023 through January 2024... Three themes emerged from the interview analysis: (1) overwhelming caregiver burden, (2) difficulties coping with the caregiver role, and (3) gaps in caregiver support... Family caregivers for individuals with GBM desire more straightforward and proactive information and education about their care recipients from their medical providers. There is an opportunity for more utilization of hospice, palliative, and rehabilitation services to provide necessary training to GBM patients and their caregivers.

Our Hospice to add new personal care services 1010WCSI.com, Columbus, IN; 2/26/25 Our Hospice of South Central Indiana is announcing a new service to assist those in need and to help them remain in their homes as long as possible. The personal care service is meant to help provide care that can help clients remain independent. Personal care services can include daily living needs such as bathing and grooming, dressing and toileting, meal preparation, medication reminders, light housekeeping and laundry and transportation to appointments. ... The program will be in addition to existing hospice and palliative care programs provided by the non profit group. ... Our Hospice of South Central Indiana, based in Columbus, serves clients and their families in 22 counties. There are also offices in Greensburg and North Vernon.

‘Global problem’: Numerous factors, biases contribute to overtreatment at end of life Healio; by Josh Friedman; 2/26/25 Nathan I. Cherny, MD, has worked all around the world. At every stop — from Australia to Israel, and Memorial Sloan Kettering Cancer Center in between — he has seen people with cancer receive overly aggressive treatment at the end of life. ... In a review published in ESMO Open, Cherny and a cohort of multinational colleagues highlighted numerous reasons why overtreatment occurs among patients approaching the end of life, ... They listed more than 20 contributing factors, including desire for control of the cancer, denial and anger, family pressure and hope preservation. The two factors that contribute most to overtreatment are optimism bias and the “counterphobic determination to treat,” which involves clinicians having a difficult time introducing the suggestion of palliative care revert to offering further treatments, Cherny said. ... Responsibility for decisions does not need to fall solely on oncologists, Cherny added. Palliative care physicians, social workers, chaplains and others can be part of a team to assist patients with their choices. ... The number of patients who are overtreated differs at each institution. “Each institution has its own culture of care,” Cherny said. Editor's note: This article puts forth significant insights for all palliative and hospice clinicians, interdisciplinary teams, and palliative/hospice executive leaders. Apply Cherny's to your referral sources: "Each institution has its own culture of care." Apply these findings to your own palliative and hospice services. 

Interdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study BMC Palliative Care - Part of Springer Nature, Open Acces; by Annica Lagerin, Christina Melin-Johansson, Bodil Holmberg, Tove Godskesen, Elin Hjorth, Lena Junehag, Carina Lundh Hagelin, Anneli Ozanne, Johan Sundelöf & Camilla Udo; 2/19/25... This study aimed to gain an in-depth understanding of healthcare professionals’ (HCPs) experiences of existential conversations with patients with PC needs and their next-of-kin by generating a theoretical model. ... To emphasize the importance of ethical competence for quality patient care, particularly in PC, a combination of care ethics, clinical proficiency, relational skills and effective communication is essential. ... The potential obstacles we identified that require attention include the need for managers ... to support HCPs by allowing time for reflection, developing new routines, and providing education focused on existential conversations in PC. However, the main contribution of this study is the description of the interdisciplinary strategies HCPs used to establish meaningful, existential conversations by maintaining presence, as this paved the way for trusting conversations with patients and next-of-kin. Editor's note: Pair this with today's article "Why being trustworthy is a leadership hack that drives success."

Candice Bergen’s caregiving journey and how estate planning can help FindLaw; by Catherine Hodder, Esq.; 2/20/25 Candice Bergen is a movie and television star and comedienne best known for her role as Murphy Brown. ... Bergen’s husband of over 20 years, Marshall Rose, recently passed after battling Parkinson’s disease. Her first husband, director Louis Malle, died from lymphoma. In Bergen’s memoir “A Fine Romance,” she describes the struggle of caregiving for someone who is critically ill. She writes, “It really costs you to take care of someone who is critically ill day after day.” Many caregivers can relate. According to the NIH, 50 million people care for a disabled, older adult, or chronically ill family member or friend. ... However, there are estate planning tools available that can help caregivers manage the health and support of their critically ill loved ones. ... 

What is death positivity? Phaneuf Funeral Homes & Crematorium, New Hampshire & Vermont; by Phaneuf; 2/19/25 Death positivity is a growing movement that challenges the long-held taboos surrounding death. Rather than shying away from the subject, death positivity encourages individuals and communities to discuss mortality openly. It’s about accepting death as a natural part of life, reducing the fear and stigma often associated with it, and using that acceptance as a foundation for better end-of-life planning and living more fully. Historically, many cultures—including those in the New England region—often treated death as a private, somber affair. Today, however, a new narrative is emerging: one that celebrates the life lived, honors the memories left behind, and helps families make informed, compassionate decisions about the future.

Improving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing studentsState Nurses Associations - Kansas State Nurses Association; by Shelby True, MSN, RN; Libby Rosen, PhD, RN, IBCLC; Ashley Seematter MSN, RN; Jeri Harvey & Karly Lauer, MSN, RN; 2/20/25Many baccalaureate nursing programs throughout the United States thread concepts of bereavement and end-of-life care throughout their curriculum. However, a standardized education program for nursing students that increases the knowledge, confidence level, and application of skills a nurse must possess when providing perinatal bereavement care is often absent from the curriculum (Sorce & Chamberlain, 2019).  Perinatal loss can have a profound impact on parents and their loved ones, leading to emotional, psychological, physical, and spiritual trauma that deeply affects the lives of those involved. The nursing care each parent receives at the time of the loss may be remembered for years to come and is crucial to determining the nature of the grieving process (Sorce & Chamberlain, 2019). ... To improve the knowledge, confidence, and skill level of nurses providing perinatal bereavement care, a role-play perinatal bereavement simulation was developed and implemented in two Midwestern universities’ baccalaureate nursing programs in the maternal/newborn courses. Editor's note: Having served our hospice's Pediatrics Team for four years, the grief of parents, grandparents, siblings affected me deeply. I remember vividly a young mom unable to physically leave her baby's body with the hospital's nurse. Gently, we held her baby together. Over the course of about 15 minutes, the mother gradually shifted the weight of holding her baby over to me, before the hardest task of her life--leaving the hospital without her child. (It was Christmas week. I bawled when I got home.) Visiting them at the funeral home and after in their home, I experienced horrible, disenfranchised comments and attitudes from others (especially a local preacher). Leaders: tune into your pediatric hospice and palliative team members. What specialized support and education do they need? And, we never know what personal stories of perinatal bereavement those around us continue to carry. 

[UK - St. Christopher's Hospice] Woman with rare brain disease dances with husband for first time in yearsReposted in Daily Journal from Talker News, Tupelo, MS; by Isobel Williams; 2/20/25 This is the touching moment an elderly woman living with a rare brain disease slow danced with her husband - for the first time in years. Constance Bartholomew, 69, has progressive supranuclear palsy (PSP), a neurological condition which has left her struggling to walk. The disorder - which is estimated to affect around 4,000 people in the UK - can cause problems with balance, movement, vision, speech and swallowing. Constance began physiotherapy at St. Christopher's Hospice in Sydenham, south-east London in September last year - at which point husband Dennis, 72, joked he would pay a million pounds to dance with her again. Upon hearing the remark, rehab assistant Ralitsa Angelova ... made it her mission to make it happen.  ... “She is unable to walk, to articulate, her eyesight has failed. It’s a terrible condition. I wouldn’t wish it on anyone. But she is fully aware. There is absolutely nothing wrong with her memory or comprehension. ..." The video has been released as hospices in London come together to change perceptions of hospice care and highlight the vital importance of gifts in wills to their holistic palliative care services for adults and children in their communities. The hospices are taking part in the This is Hospice Care campaign, a national collaboration of 143 hospices across England, Scotland and Wales, brought together by Hospice UK.Editor's note: St. Christopher's Hospice--founded by Dame Cicely Saunders--is the home for modern day hospice care.  Click here for a YouTube video of Constance and Dennis. Click here for the article we posted on 2/21 about the UK's "This Is Hospice Care" initiative.

 St. Francis Hospice hosts Sweetheart Lunch for those grieving lost partners Fox 23 News, Tulsa, OK; 2/14/25 St. Francis Hospice in partnership with Moore Fitzgerald Funeral Service hosted their Sweetheart Lunch to help those grieving a lost partner or spouse on Valentine's Day. "We're having a Valentine's Day party—we call it Sweetheart Lunch—for people that have lost a loved one during the past year, most often a spouse," explained Joseph Moore, the owner of Moore Fitzgerald Funeral Service. "Valentine's Day is such a difficult time for people that have recently lost a spouse. There are so many memories associated with Valentine's Day and so forth. We just want to provide a place where they'll feel loved and not alone today." Charlie Dodd, a bereavement coordinator with St. Francis Hospice, said events like this give people a sense of community during a difficult time.

Hearts for Hospice showers patients with love Davidson Local, Davidson County, NC; 2/14/25 As people prepare to shower each other with love each Valentine's Day, the annual Hearts for Hospice provides comforting packages to more than 350 patients and families. Staff says that the community initiative is a highly regarded event at [Hospice of Davidson County] HODC, eagerly anticipated by volunteers and staff each year. This Valentine-themed event begins with contributions of sweet treats, stuffed animal items, and personal care items donated by individuals, civic groups, and the business community. Following the drop-offs, a team assembles Valentine-themed goodie bags filled with delightful treats. These lovingly prepared gifts are then delivered to participating patients throughout the service area on Valentine’s Day, creating an opportunity to spread joy, warmth and affection.

Death Matters: The gift of presence: Tips for visiting someone who is dying Squim Gazette, Squim, WA; by Jeanette Stehr-Green, Volunteer Hospice of Clallam County; 2/12/25 We sometimes avoid visiting friends or family members who are terminally ill. We make lots of excuses. We don’t know what to say. We don’t know how to act. We don’t want to be a bother. The hard truth is that dying, the final stage of life, can be a lonely experience without the presence of family and friends. A visit during this time can bring comfort to the dying person and their family. It can also provide an opportunity to share feelings, reminisce, and say goodbye. Visiting a dying person seems difficult because most of us lack experience. It only takes a little courage and a few ideas to create a meaningful moment. ... Editor's note: These excellent guidelines empower hospice patients' families and friends--and protect patients' vulnerable energies and emotions--in multiple settings across the trajectory of dying. How might you adapt these for your own patient/caregiver support and community outreach?