Literature Review

Understanding a patient’s AI medical journey The Hastings Center; by Ian Stevens, Erin William, Jean-Christophe Bélisle-Pion, and Vardit Ravitsky; 3/5/25As artificial intelligence becomes increasingly integrated into U.S. health care, patients should know the ways in which AI is being used in their care, concludes a new paper, “Bring a ‘Patient’s Medical AI Journey’ to the Hill.” Transparency is crucial for interactions between health care providers and individual patients, as well as for systemic level uses of AI, including:

Children and family bereavement needs on the rise at Hospice of Santa Barbara Santa Barbara Independent, Santa Barbara, CA; by Hospice of Santa Barbara; 3/5/25 It’s not just adults who are impacted by grief and loss in our community. Children are as well. One in five children will experience the death of someone close to them by age 18, and one in twenty children will experience the death of one or both parents before reaching adulthood. Although death and grief are inevitable parts of life, these statistics highlight just how many children are impacted. Children are especially vulnerable when they lose a close loved one, and without professional support, grief can be especially paralyzing and overwhelming. ... Hospice of Santa Barbara’s Children and Family Services program provides free professional support and coping tools for children, teens and their families ... HSB is active in local campuses, providing professional weekly support groups from elementary to college age students. On-campus counseling services provide a vital space for open communication, support and the development of coping skills.Editor's note: What specialized child, teen and family bereavement services are you providing? Missing? What more can you do, with life-changing outcomes for those you serve?

Parting Stone celebrates serving 10,000 families with solidified remains service Business Insider, Santa Fe, NM; Press Release; 3/5/25Parting Stone, an innovative death care company transforming the way families memorialize loved ones, is proud to announce that it has served 10,000 families with its solidified remains service. … s more families choose cremation for a loved one or pet, they seek meaningful ways to navigate grief, Parting Stone has emerged as a trailblazer in reshaping the narrative around death and memorialization. By offering a new form of remains that resembles a collection of 40–80 smooth stones, the company is helping people find comfort and connection in the grieving process. Solidified remains are a complete alternative to conventional “ashes.” … The National Funeral Directors Association predicts that by 2030, nearly 80% of Americans will choose cremation over traditional burial. Editor’s note: Click on the title’s link to see a photo.

What do the ashes symbolize in life, death, and cultural rituals? Brain Wise Mind - Symbolism; by Jodie Lawrence; 1/26/25In this article, you’ll explore the rich symbolism behind ashes, from themes of loss and renewal to connections with the cycle of life. By understanding these meanings, you can gain a deeper appreciation for how ashes play a role in various rituals and practices. Get ready to uncover the significance that lies within these seemingly simple remnants. ... Ashes symbolize a range of profound concepts, particularly in relation to life and death. You can find their meanings in various cultures and traditions, reflecting significant themes.

How much does end-of-life care generally cost? 50 Plus Finance; by David Leto; 3/3/25 [For the public] ... Knowing how much end-of-life care generally costs can help you manage and prepare your finances appropriately to ease the burden on you and loved ones when the time comes. ... The cost of end-of-life care can vary widely depending on the services required. On average, however, Americans spend between $10,000 and $70,000 on such care, with the majority of expenses often occurring in the last year or month of life. These costs can stem from hospital stays, at-home care, or nursing facility care. Hospice, which focuses on comfort and pain management, typically costs less than intensive medical treatments but still averages several thousand dollars each month, or around $150 a day with insurance. Understanding these figures helps you set realistic financial expectations and prepare for them. ...

Aging With Adventure: The challenge of caring Daily Hampshire Gazette, Northampton, MA; by Eric Weld; 2/28/25 I made a mistake. I took a hiatus from writing in this space about aging with adventure because I thought I was taking a hiatus from adventure. Boy, was I wrong. I errantly thought that spending more than a year caring for my elderly mother in her final time on earth was taking me away from adventure. I am honored to have enabled my mother’s final days spent at home — not her home, but my sister’s private home — instead of in a public or private nursing facility. ... I assumed, in taking on the role of her co-caretaker, I would temporarily preempt my semi-retirement modus operandi of striking out on great adventures. To the contrary, what I learned from spending nearly two years co-caring for my aging mother is that end-of-life care is, indeed, every bit an adventure on many levels. And of course, it’s certainly about aging. [Click on the title's link to continue reading this inspirational caregiver story.]

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."

Pennsylvania lawmaker introduces ‘No Patient Left Behind Act’ WHTM - PA Homepage; by Brady Doran; 2/19/25 A Pennsylvania lawmaker introduced a bill that would ensure hospitals have visitation policies that balance patient needs with public health protocol. According to Sen. Doug Mastriano (R-33), elderly patients left alone in hospitals experience faster physical and cognitive decline. The No Patient Left Behind Act, introduced by Mastriano, would ensure Pennsylvanians with medical treatment or end-of-life care have support by their sides. “Hospitals should be places of healing. However, for far too many, they have become places of loneliness, despair, and unnecessary suffering,” Mastriano said.

Juniper House on National Historic Register K103, Portland, OR; 2/18/25 The Juniper House is among Oregon's latest entries in the National Register of Historic Places ... for its statewide significance as Oregon's first end-of-life care home dedicated exclusively to residents with HIV/AIDS [May 1987] and for its substantial impact on statewide healthcare and LGBTQ+ history. ... In addition to caring for residents, the work of Juniper House included advocacy and educational efforts that were crucial in shaping public opinion and responses to HIV/AIDS.

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?

New report details financial, emotional toll of Parkinson’s on family caregivers McKnights Home Care; by Foster Stubbs; 2/4/25 A new report sheds a light on the unique challenges faced by family caregivers who care for loved ones with Parkinson’s disease (PD). The report, Parkinson’s Disease Caregiving in the US, features insights from secondary analysis and supplementary interviews with 10 PD caregivers. These caregivers average 31 hours of unpaid care per week; half of interviewed caregivers exceed 100 hours each week, according to the report. The National Alliance for Caregiving (NAC), with support from The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and Arcadia University, released the report.  

How a St. Louisan helps her community navigate death by filling out advance directives NPR - St. Louis on the Air; by Jada Jones; 1/28/25 When Vivial Lopez’s grandmother was on life support, her family was faced with many difficult decisions. Her grandmother did not have an advance directive, so her family did not know her final wishes. The experience of navigating her grandmother’s end-of-life plan without any direction led Lopez to advocate for families to prepare advance directives - especially those in Black and brown communities. Approximately only on ein three adults complete an advance directive for end-of-life care. Lopez works with the Gateway End-of-Life Coalition to empower members of the St. Louis community to navigate death through quality end-of-life care.  Editor's note: Click here for AARP - Find Advance Directives Forms by State, also available in Spanish.

Hospice rationale should be reassessed, says ethicist Medscape; by Arthur L. Caplan, PhD, Medical Ethics at NYU’s Grossman School of Medicine; 1/23/25 ... Decades ago, I first found out about the idea that came from England and a nurse, Cicely Saunders, to change the setting in which people die. ... I think that was a wonderful idea, and it has revolutionized end-of-life care. We have many excellent, superb hospice programs. ... The hospice institution is decades old, and it’s time to take another look at what’s going on there.  ... Private equity is all over this area, buying up hospice chains and home care hospice — looking to make big profits but not looking to maintain the quality requirements that ought to be there or to do more than is minimally required to set up and staff hospice. ... ... For reasons of serving the best interests of hospice patients, we should be rechecking the fairness of reimbursement, not overburdening families with care that ought to be provided by hospice programs, and making sure that those who are dying are monitored adequately and receiving checkups regularly. ...