Literature Review

A simple question changed how I saw my daughter’s life Newsweek Life; by Nikki Moberly; 10/20/24 When my daughter was born almost 24 years ago, not only did I begin my journey as a first-time parent, I embarked on an odyssey that nobody could have prepared me for. This little girl with the face and disposition of an angel was born with a devastating condition, diagnosed at two-and-a-half months old with Aicardi Syndrome. ...  The first years of her life were laser-focused on learning more about her rare condition, symptom stabilization, medication adjustments, therapists, and doctor's appointments. Erin was eligible for early intervention services allowing her to go to school at age three. ... For one of those interviews, the social worker came to my home for us to complete Erin's "student profile" card. I was about to learn the power of a well-placed question. She started by simply asking: "What are Erin's strengths?" ... [Click on the title's link to continue this mother's journey through her daughter's life and death.]

Rosalynn Carter Institute redefines caregiving field with the launch of research informed profiles of experiences of caregiving© BusinessWire - Rosalynn Carter Institute for Caregivers, Americus, GA; by Ava Jafarmadar; 10/15/24 The Rosalynn Carter Institute for Caregivers (RCI) today announced the launch of the Profiles of Experiences of Caregiving© (Caregiver Profiles©), an innovative framework that leads within the caregiver field by reimagining and elevating family caregivers, so they are better seen, understood, and supported. Developed in partnership with Duke University through an extensive review of over 10,000 research papers and comprehensive caregiver focus groups, these profiles shift the focus from the care recipient’s diagnosis to the caregiver’s unique experience. This new approach aims to provide more tailored, holistic support to the over 105 million people in the United States who are actively engaged in family caregiving. 

Breaks for caregivers: Atlanta nonprofit helps parents of medically fragile children GPB PBS - NPR, Atlanta, GA; by Ambria Burton; 10/14/24 ... The Georgia Division of Family & Children Services (DFCS) defines medically fragile children as children with "medical status that can rapidly deteriorate, resulting in permanent injury or death; one that requires medical care and/or technology to maintain health; and/or a condition that requires extraordinary supervision and observation." The Georgia-based Fragile Kids Foundation reports that there are about 13,000 medically fragile children in Georgia, and the Georgia Pediatric Program (GAPP) requires a waiver to provide services to medically fragile children with multiple system diagnoses, including nursing and personal care support services at homes and communities. The National Center for Pediatric Palliative Care Homes (NCPPCH) aims to provide a pediatric respite home in every state, and Life House Atlanta is a nonprofit public charity aiming to open the first pediatric palliative care home in Atlanta — the first in the Southeast overall.

Caring for the family caregivers made ill by their work Penn LDI; by Hoag Levins; 10/11/24 A randomized controlled trial (RCT) led by LDI Senior Fellow Barbara Riegel, PhD, RN, of the University of Pennsylvania School of Nursing has identified a virtual health coaching intervention that helped lessen stress for unpaid family caregivers who often neglect their own care. Published in Circulation: Heart Failure, the study focused on unpaid family caregivers providing care to adults with chronic heart failure (HF)—a condition that occurs when the heart can’t pump enough blood for the body’s minimal needs. Because the disease has a variety of symptoms and manifestations that limit palliative care and respite services, it places a heavy burden on home caregivers who are “are commonly overwhelmed and face emotional, psychosocial, and financial risks that result in a decline in their own health and wellness.”Editor's note: Family Support Through Serious Illness is an online video library of 30 brief, state-of-the-art videos for family caregivers, used upstream in the trajectory of serious illness and through palliative/hospice care. These pair with a staff video training, "Empathy for Hospice Professionals."  These are designed and provided by Composing Life Out of Loss, a sponsor for this newsletter.

How to prepare yourself for death when given a terminal diagnosis Yahoo!Life; by Kate Ng; 10/8/24 Receiving a terminal diagnosis can be a devastating blow, for the individual and their loved ones. There is no right or wrong way to react to such news, and people respond with all sorts of emotions - from anger and denial, to acceptance and peace. Having a terminal illness can also give a person new perspective. ...

One Senior Place: What legal steps should be taken after dementia diagnosis? Florida Today; by Brenda Lyle; 10/1/24 After a dementia diagnosis, preparing key legal documents early helps families focus on the quality of life for their loved one. ... Dementia is a term for many progressive neurodegenerative disorders that affect memory, thinking, and behavior. Alzheimer accounts for about 60% of all dementias. As the disease advances, individuals may lose the ability to make informed decisions about their health care, finances and other important aspects of life. Legal planning is absolutely crucial for ensuring that the wishes of the person with dementia are honored and that their affairs are managed appropriately. This planning also helps reduce stress for family members and caregivers. [Click on the title's link to continue reading for basics about Durable power of attorney, Heath care surrogate, Living will, Last will and testament, and Guardianship.]

Grief memoir: Diapers and hospice We Are The Mighty; by Jessica Hall; 9/25/24 This is Chapter 8 in [Jessica Hall's] Grief Memoir. ... Following our trip to Disneyland, I was in the homestretch for my pregnancy. I was worried about what would happen when Dad went into the hospital again. What if it happened when I was in active labor? What if I was in a sleep-deprived haze with a newborn? How do I care for Dad when I’m far away and can’t travel? ... In the days before my planned induction, Dad was taken off intubation and was doing well enough. ... [Later in the story ...] I had given birth just two weeks before but I started to move quickly to go home. I started doing laundry so the baby and I could fly home to say goodbye to Dad. ...

Improv for Caregivers receives a grant from the New Hampshire State Council on the Arts EINPressWire; by A. A. Cristi; 9/23/24 The New London Barn Playhouse received an arts in health grant from the New Hampshire State Council on the Arts to continue and expand their Improv for Caregivers program through a larger umbrella program titled “Improv for a Cause.” “Improv for a Cause” will encompass two communication programs that use a similar process to reach different communities. The first, Improv for Caregivers, in partnership with Lake Sunapee Region VNA & Hospice, is an ongoing communication workshop series for those who care for loved ones with dementia and Alzheimer's. ... Each improv workshop session combines insight from healthcare professionals with improvisational theatre techniques, with a goal of developing new communication skills, strategies to cope with stress, flexibility in relationships, and an understanding of loved ones' changing perspectives. With guidance from the VNA and caregivers in the community, the team of actors prepare short scenarios that portray situations caregivers commonly face, such as sundowning, taking away car keys, collaborating with care staff, and hallucinations. ...

Wind phones help the bereaved deal with death, loss and grief − a clinical social worker explains the vital role of the old-fashioned rotary phone The Conversation; by Taryn Lindhorst; 9/20/24 My mother died in my home in hospice in 2020, on the day my state of Washington went into COVID-19 lockdown. Her body was taken away, but none of the usual touchstones for grief were available to our family. ... As a clinical social worker and health scholar with 40 years of experience in end-of-life care and bereavement, I knew that I needed some way to tend to my grief for my mother. While in lockdown, I began looking for resources to help me. Then I heard about the wind phone. What is a wind phone? At its simplest, a wind phone is a rotary or push-button phone located in a secluded spot in nature, usually within a booth-type structure and often next to a chair or bench. The phone line is disconnected. People use the wind phone to “call” and have a one-way conversation with deceased loved ones. Here they can say the things left unsaid. Wind phones offer a setting for the person to tell the story of their grief, to reminiscence and to continue to connect to the person who is gone. For many, it is a deeply moving, life-affirming experience. About 200 wind phones are scattered throughout the United States. Editor's note: This creative tool is similar to common clinical tools of writing a letter to the deceased person, and the "Empty Chair" technique. Caution: This should never be used as a gimmick. This can be terribly confusing and upsetting for persons with dementia, or supportive if used with professional sensitivity for the patient's awareness and experience. For persons with dementia, be familiar with the ground-breaking "Validation Therapy" techniques by Naomi Feil. 

AI shouldn't decide who dies. It's neither human nor humane Fox News; by John Paul Kolcun and Anthony Digiorgio; 9/20/24 [Opinion] As we write this, PubMed ... indexes 4,018 publications with the keyword "ChatGPT." Indeed, researchers have been using AI and large-language models (LLMs) for everything from reading pathology slides to answering patient messages. However, a recent paper in the Journal of the American Medical Association suggests that AI can act as a surrogate in end-of-life discussions. This goes too far. The authors of the paper propose creating an AI "chatbot" to speak for an otherwise incapacitated patient. To quote, "Combining individual-level behavioral data—inputs such as social media posts, church attendance, donations, travel records, and historical health care decisions—AI could learn what is important to patients and predict what they might choose in a specific circumstance." Then, the AI could express in conversant language what that patient "would have wanted," to inform end-of-life decisions. We are both neurosurgeons who routinely have these end-of-life conversations with patients’ families, as we care for those with traumatic brain injuries, strokes and brain tumors. These gut-wrenching experiences are a common, challenging and rewarding part of our job. Our experience teaches us how to connect and bond with families as we guide them through a life-changing ordeal. In some cases, we shed tears together as they navigate their emotional journey and determine what their loved one would tell us to do if they could speak. 

It pays to know: How to be an effective health care agent The Rafu Shimpo; by Judd Matsunaga, Esq; 9/12/24 Being asked to be someone’s health care agent is a special honor — it means the person is saying, “I trust you with my life.” That said, it’s also a huge responsibility. As a health care agent, you will be in charge of making healthcare decisions for your loved one when they can no longer make decisions for themselves. ... Advance care planning is a process. It’s not something that gets done all at once. To help you be an effective health care agent, here are some questions you can ask your loved one: (Source: www.mskcc.org, “How to Be a Health Care Agent”)

Hugo man dies in house fire  [hospice patient] KXII 12 TV, Hugo, OK; by KXII Staff; 9/5/24 A fire at a home in Hugo claims the life of a former Choctaw County assistant district attorney. Officials said the fire happened Sunday afternoon. The Choctaw County Emergency Manager told News 12 that John Bounds, who was in hospice care, was unable to escape. All others in the house got out safely.Editor's note: What emergency discussions do your interdisciplinary team members have with home hospice patients and their caregivers? Regular fire safety training (and other forms of patient care safety, workplace safety, etc.) are required by OSHA and accreditation organizations. 

“What I wish I knew about hospice”: A Cleveland Clinic palliative care physician’s insights The Healthy; by Dr. Patricia Varacall, DO; 9/3/24 End-of-life care is deeply personal and incredibly complex. An expert MD shares essential insights on hospice: "At its core, is about human connection." … Laura Hoeksema, MD, MPH, FAAHPM, medical director of Cleveland Clinic Hospice and staff physician in the department of palliative and supportive care, explains the importance of hospice: “Death is a part of life just as much as birth is. When time becomes limited, patients need to be able to spend time in a way that’s meaningful to them.” ... Dr. Hoeksema emphasizes that choosing hospice care is exactly that—a choice. The team offers additional support, guiding patients and their families through the last months of life. ... “When a patient has a serious illness, it’s common for their illness to become the primary focus,” reflects Dr. Hoeksema. The constant anticipation of how the disease might progress can create overwhelming anxiety. With hospice, the illness recedes into the background, allowing the emphasis to be on caring for the person as a whole. ... “The most profound healing I’ve witnessed as a physician has been in patients receiving hospice care,” Dr. Hoeksema adds. She recalls seeing families reconcile after years of tension and others coming together after long periods of distance. The joy on a patient’s face when surrounded by loved ones, laughing and reminiscing, is what it’s all about. “Hospice care, at its core, is about human connection.”