Literature Review

Patients without family or health care proxies face overtreatment or limbo in hospitals WHYY - PBS; by Maiken Scott; 2/24/25 A program matches unrepresented patients with volunteers who can make care decisions for them during health care crises. ... [Intensive care physician David] Oxman says unrepresented patients are a small, but growing group. Some have outlived their family members, or are estranged from them. Maybe they’ve moved a lot, sometimes substance use or homelessness plays a role. The situation is especially complicated with patients who have dementia, or who can’t communicate their wishes for other reasons. ... Most states have provisions where medical guardians and medical decision makers can be appointed by a court, but that takes a long time. In the meantime, a search for relatives begins. David Sontag, director of ethics for Beth Israel Lahey Health in Massachusetts, ... created a matching program where health care professionals volunteer to represent patients, not within their own hospital systems because that could cross ethical boundaries, but at other hospitals. “This is an opportunity for us to help some of the most vulnerable members of our communities, those who have nobody to speak for them when they can no longer speak for themselves. And that allows us to respect their autonomy throughout their lives,” he said.

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. 

Improving quality of life and end-of-life care: Standardizing goals of care notes in EHRs EurekAlert! - American Association for the Advancement of Science (AAAS), Indianapolis, IN; Regenstrief  Institute, peer-reviewed publication; 2/19/25 ... A new study by researchers from Regenstrief Institute, the Indiana University School of Medicine and Indiana University Health presents the standardized goals of care note they developed, deployed and evaluated as a quality improvement initiative at IU Health, a large, statewide healthcare system. ... The study authors report:

Cancer, aging, and meaning: Navigating psychosocial challenges The ASCO Post (Association for Clinical Oncology); by Ramy Sedhom, MD; 2/18/25 I’ve learned a lot about medicine over the years, but one thing I wasn’t taught was how to guide someone through the existential weight of dying. My education centered on diagnosing, curing, or at least managing disease—not on the delicate art of helping people and their loved ones cope with what cannot be cured. Now, several years into my career as an oncologist, primarily caring for older adults, I recognize that providing cancer care for the whole patient requires deep attention to their psychosocial health needs. ...

Witnessing a living funeral Parkview Health; by Tim O'Sullivan, MA, Spiritual and Social Services Supervisor, Parkview Hospice; 2/16/25 ... Rather than planning services after they pass and miss out on a gathering of the people who are most precious to them, some are choosing to schedule a "funeral" while they are still living so they can be a part of the ceremony. These events are known as Living Funerals. As a hospice caregiver, I have seen a rise in the number of these pre-death celebrations of life. While this may not be for everyone, it can be a meaningful experience for those who have chosen to remember a life in this way. I was invited to one of these events and witnessed firsthand the power of acknowledging death while fully living in the moment. ... [Click on the title's link to continue reading.]

How to help caregivers of patients with dementia Physician's Weekly; by Linda Girgis, MD, FAAP; 2/13/25 Dr. Linda Girgis discusses how physicians can assist caregivers of patients with dementia, helping these critical caretakers avoid experiencing burnout. ... As doctors, we all have witnessed caregiver burnout. Often, it was a family member who bore the brunt of the responsibility, one for whom there were no vacation days or sick time available. Whatever specialty we practice, we know patients with dementia can present a significant problem. ... How can we assist caregivers of patients with dementia?

HealthcareBusinessToday.com series on hospice careEditor's note: The following articles were posted on 2/10/25 by HealthcareBusinessToday.com.

Learning from death: New memoir If We Never Meet Again imparts lessons from working with hospice patientsThe MarCom Journal, Charleston, SC; by Globe Newswire; 2/6/25While the topic of death is generally considered taboo, English teacher turned hospice administrator Matthew Cornett believes there is much to be learned from death. After becoming an empty nester, Cornett left the classroom behind and began a second career in hospice care. And the more time he spent with people as they approached the end of their life, the more he realized that their deaths had meaning. And what emerged from those final moments was something profound. Hoping to make others feel more comfortable when it comes to preparing for and talking about death, he presents a memoir of his journey into the world of hospice care. In If We Never Meet Again, Cornett chronicles his experiences providing compassion and support to hospice patients while adjusting to his new role. Finding inspiration in his patient’s “death stories,” he found himself on an unexpected path of self-discovery. Cornett’s personal reflections on these intimate and emotional interactions encourage readers to reconsider how they view death and dying.

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.  

What can we learn from the dying? Newscastle's News Letter Journal (NLJ), Newcastle, WY; by Kelly Evans-Hullinger, MD; 1/26/25 For the last five years, I have had the great privilege of serving my local health system as Medical Director for Home Hospice. Every week I sit in a meeting with the multidisciplinary caretakers on this team ... Patients facing their own deaths want to talk about their lives. Our staff frequently tries to facilitate what they call a “life review” in which a patient can openly talk about their childhood, family, career, service, and sometimes their regrets. This is therapeutic for the dying patient and their loved ones.  ... I have recently thought about this particular human need – to reflect and remember one’s life. I take this as a reminder to both seek those stories from my own loved ones (I wish I had asked my grandmother more questions about her life) and, perhaps, to tell and write about the things in my own life I would want to be remembered after I am gone. For if there is another thing I’ve learned serving patients on hospice, it is that my death is also inevitable; but, I think, life’s finality is what gives it beauty and meaning. 

If you’ve overcome these 9 challenges in life, you’re more resilient than you think Personal Branding Blog; by Lucas Graham; 1/21/25 Resilience isn’t always about being unshakable or invincible. Sometimes, it’s just about surviving the chaos, picking yourself up after the mess, and somehow finding the courage to keep going. In the moment, it’s hard to see how strong you really are—you’re just trying to make it through. But when you pause and look back, you realize the grit it took to get here. ... [If] you’ve been through these nine challenges and made it out, you’re way more resilient than you give yourself credit for.

[Irelan] How digital storytelling can support families of very ill children RTE, Ireland; by Veronica Lambert and Razieh Safarifard; 1/17/25 Imagine a family gathered around a young child's bed at home or in the hospital, facing the heart-wrenching reality that their time together is limited. The moments they share now - the stories told, songs sung, laughter, and tears - are more precious than ever. But how can these memories be preserved, not just for the present but for a lifetime? Memory-making activities provide a way to capture these moments, offering comfort during and after their journey through palliative care. In Ireland, the need for such interventions is growing, as more children live with life-threatening conditions and families often find themselves without adequate support in these difficult times. Our new project addresses this gap with a digital storytelling memory-making programme tailored to the unique cultural and practical needs of Irish families.

How poor communication is killing patients and burning out doctors Medpage Today's KevinMD.com; by Pamela Buchanan; 1/14/25 This week alone, I had two particularly heart-wrenching encounters [as an Emergency Room physician]: A 65-year-old man with metastatic lung cancer, convinced his shortness of breath was just pneumonia. When I explained the progression of his disease, he was shocked. No one had told him that his cancer was likely incurable. A 97-year-old woman brought in for “failure to thrive.” She was frail, pale, and not eating—classic signs of the final stages of metastatic cancer. When I suggested hospice care, she seemed blindsided, as if this reality was completely new to her. Both cases highlight a troubling trend: Patients often come to the ER not just for care, but for clarity. They don’t understand their diagnosis, prognosis, or treatment plan. ...