Literature Review

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. ...

Red Cross urging blood donations amid severe weather, wildfires ABC News 27 WKOW, Madison, WI; by Chad Thompson; 1/22/25 The American Red Cross is encouraging donors to give blood or platelets as winter storms and California wildfires have impacted blood supply. Donors of all blood types – particularly type O negative blood donors and those giving platelets – are needed to help save lives this month, according to a press release. "As dangerous snow and ice continue to sweep across the country, and wildfires in Southern California continue to burn and impact air quality, Red Cross blood drive cancellations have grown into the hundreds," the release stated. Red Cross said those events have resulted in more than 12,000 uncollected blood and platelet donations in January. More winter storms are forecast for this week could further strain the blood supply.Editor's note: Does your agency partner with your local Red Cross? The hospice I served regularly used our Community Room for Red Cross blood donations, a couple of times each year. These interactive experiences fostered great morale and humanity across all roles--side-by-side--giving "life" in a practical, affordable, meaningful way.

Community invited to see Edina Thespians' one-act play, 'Wit' Sun Current, Coon Rapids, MN; by Alex Kautzman; 1/20/25Edina High School Thespians are ... looking forward to showing off their hard work to the community in two performances at the Edina Performing Arts Center. ... "Wit" centers on Vivian Bearing, a brilliant poetry professor, as she undergoes an experimental and extremely aggressive chemotherapy treatment. As Vivian undergoes treatment at the hands of impersonal doctors, she discovers that human compassion may be more important than intellectual wit.Editor's note: This Wit telepay is based on the 1999 Pulitzer Prize-winning play by Margaret Edson. Its 2001 television drama film was directed by Mike Nichols, written by and starring Emma Thompson. Wit has been used extensively for community and clinical education, fostering conversations about ethics, palliative care/hospice, advance directives, quality of life, and more. Click here for more information. Wit can be streamed via Max and the Max Prime Video Channel.

‘Those who have made death their life’ Part 2: Family The Daily Yonder - Keep It Rural; by Hannah Clark; 1/16/25 Hannah Clark spent six months riding along with the nurses and certified nursing assistants (CNAs) of Hearth Hospice who provide in-home care to those living in Northwest Georgia and Southeast Tennessee. These hospice workers often drive up to a hundred miles a day to visit a handful of patients scattered across the Appalachian landscape in both rural towns and urban centers. What will follow this introductory essay is her photo reportage in three parts, documenting what she has witnessed accompanying these caregivers. The intimate portraits and vignettes show tender moments at different stages towards the end of one’s life. Their beauty lies in the companionship Clark captured in moments of need and vulnerability. Editor's note: Click here for Part 1, which we posted 1/16/25. 

Knoxville nurses bring wedding to UT Medical Center for bride’s dying mother WATE Knoxville, TN; by Molly O'Brien; 1/15/25 Nurses on the Progressive Care Unit at UT Medical Center planned a wedding for one of their patient’s daughter. Samantha Barry and her now husband, Phillip Bastelica, were supposed to get married in a few months. Barry, like most daughters, always planned on her mother being at her wedding day. Her mother, Lynn, is battling a terminal illness and was recently released from the Progressive Care Unit to hospice. ... It seemed unlikely that Lynn would be able to attend the wedding planned for August, so Barry and Bastelica decided to move the day up. ... The nurses who cared for Lynn jumped into action to plan a wedding for Barry.