Literature Review

CNY Inspirations: Caregiving is redemptive Syracuse.com, Syracuse, NY; by InterFaith Works of Central New York; 11/3/24 I will carry him with me for my life as one of the greatest examples of caring that I ever met. I will be obscure on the details, but he cared for his wife, who was completely immobilized, with a degree of fidelity, creativity, and painstaking love that I have rarely seen and could only hope to imitate. He lived what Arthur Kleinman calls in his book of the same title, The Soul of Care. ... He says, “Caregiving, for me, at its deepest was redemptive. It redeemed me…. in caregiving, there is a common tug of war between the sometimes-bitter feelings that care is a burden and the more heartening certainty that no matter how burdensome, it is ultimately rewarding.” ... My friend never expressed that verbally, but I saw it lived as I watched him over the years through periods of anxiety, weariness, anger, hurt, despair, and through it all, intense, personal demanding caregiving. “And so, in the end, the soul of care pivots to care of the soul.” Inauspiciously, my friend took good care of his soul…and certainly helped mine.

We invite you to listen to our latest podcast: Imagine Heaven, with John Burke TCN Talks (Teleios Collaborative Network); podcast by Chris Comeaux; 10/30/24 In this inspiring episode of TCNtalks, Chris Comeaux sits down with John Burke, New York Times bestselling author of Imagine Heaven and Imagine the God of Heaven, for a soul-stirring conversation on near-death experiences (NDEs) and their profound implications. John shares the overwhelming evidence of the commonalities of near-death experiences (NDEs) and the evidence that supports their validity from across the world and from across many different cultures.  Chris begins by recounting his own transformative experience reading Imagine Heaven over his summer sabbatical, describing it as a refreshing oasis for the parched soul. John delves into the fascinating and consistent patterns found in NDEs worldwide, revealing how people from vastly different backgrounds describe similar encounters of leaving their bodies, seeing with a spiritual clarity—even those blind from birth—and entering realms filled with light, love, and peace. 

How to initiate goals of care discussions with familyExpertClick, Denver, CO; by Pamela D. Wilson; 10/30/24 ... While many adults set these conversations aside until a health diagnosis or other situation occurs, having goals of care discussions early in life allows more effective planning.

80-year-old 'Mom' cares for homeless men in Philadelphia ABC News 7, New York, NY; by Matteo Iadonisi; 10/30/24 Cecelia Robinson has earned the nickname 'Mom' during her two decades of showing motherly love to homeless residents at St. John's Hospice. Her work in environmental services and housekeeping ranges from taking out the trash to developing relationships with clients and making sure their needs are met. Specifically, she works in the Good Shepherd residence at St. John's Hospice, which cares for men who are considered medically fragile. Robinson has helped men like Craig Freeman, who utilized the Good Shepherd for transitional housing and has since moved into his own apartment. Watch the video [here] to see Robinson's story in action.Editor's note: Do you need inspiration? Click here to view this beautiful story about Cecelia Robinson's care for homeless residents at St. John's Hospice.

The ‘perfect way to die’ in North Dakota CBS KX News, Bismarck, ND; by Brendan Rodenberg; 10/27/24 Death is not something people tend to look forward to at the end of their lives, but it is important to discuss nonetheless — and while many have ideas of how they would like to pass away, these vary immensely across America. This begs the question: How would North Dakotans like to spend their last moments?  ... [An insurance poll that surveyed 3,000 people from across the nation indicated]  that the perfect death for a North Dakotan would be to pass while hiking White Butte, the state’s highest point. ... The survey also delved deeply into other aspects of one’s last moments, including those surrounding them and what occurs after the moment of death. Below is a list of the most prevalent takeaways from this part of the study.

Terminally ill Illinois woman meets her idol, Jelly Roll NBC WETM 18, Elmira, IL; by Taylor Harris; 10/27/24 An Illinois woman battling terminal cancer fulfilled the dream of a lifetime Wednesday — meeting country music sensation Jelly Roll. Keita Miller, of Granite City, was diagnosed with a terminal illness in February 2022 and given just months to live. She has defined the odds, and now she’s been able to meet her musical hero, country star Jelly Roll. Her favorite Jelly Roll song is “Son Of A Sinner,” and she says his music has been a source of comfort during her illness. But more than just meeting the artist, Miller had one special request. ... The James Bess Foundation, a nonprofit that grants dreams to adults from 21 to 65 years old who are battling terminal illness, is making this dream come true.

The usage of family audiobooks as a legacy for grieving children — an exploratory quantitative analysis among terminally ill parents and close persons Springer Nature Link - Open Access; by Gülay Ate, Michaela Hesse and Henning Cuhls; 10/25/24Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice. The family audiobook is a professionally supported, voluntary, free service that is unique in Germany. ... Conclusions: The family audiobook provides a valuable opportunity for terminally ill parents with dependent children under the age of 18 to tell their own biographical story, offer support to the bereaved in remembering, and preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents. Editor's note: While this service and this evaluation are located in Germany, it can be replicated easily with today's user-friendly technologies. First and foremost are patient empowerment, privacy, and ownership of these most personal messages. Examine using your spiritual care, social work, and/or grief counselors to facilitate this project.

Job lock and parents of children with cystic fibrosis JAMA Network; by Lenore S. Azaroff, MD, ScD; Steffie Woolhandler, MD, MPH; Danny McCormick, MD, MPH; David U. Himmelstein, MD2; David Bor, MD; Samuel Dickman, MD; Adam Gaffney, MD, MPH; 10/28/24 US health care coverage is typically tied to employment, sometimes causing job lock, which deters people from changing employment because they need to maintain coverage. Few studies have assessed job lock due to children’s need for health care. Children with cystic fibrosis (CF) have substantial care needs, including costly medications, tests, and quarterly visits with interprofessional teams. Mortality from CF is higher in the US than Canada, where medical care is typically free, suggesting that financial protection may affect outcomes. We assessed whether parental job lock and other financial and employment factors are associated with access to care for children with CF.

What is narrative medicine? Finding humanity in health care Rheumatology Advisor; by Matthew Eck, MS; 10/25/24 Health care requires humanity. At its roots, narrative medicine embodies this ideology. Coined in 2000 by internist and scholar Rita Charon, MD, PhD, the field is “medicine practiced with the narrative competence to recognize, interpret, and be moved to action by the predicament of others.” ... Narrative medicine is less a specific practice and more a theoretical framework that equips caregivers and health care professionals with tools to provide more holistic care. These tools stem from storytelling principles and literature, which can hone our empathic and listening skills. ... Medical schools across the country are increasingly tailoring their curricula to include humanities-focused aspects, ... Conclusion: Regardless of one’s feelings about health care infrastructure in the United States, narrative medicine illuminates a profound truth — more can be done to accommodate patients of different backgrounds. Narrative medicine can offer health care providers a new way of thinking, attending, and recognizing. It could bring us closer to the human condition than ever before.

Hospital teams up with 'Sesame Street': 6 things to know Becker's Health IT; by Giles Bruce; 10/23/24 A California hospital's work with "Sesame Street" is helping advance digital health. Here are six things to know:

Louisiana partners with Elizabeth Dole Foundation's Hidden Heroes Campaign Audacy.com; by Laine Griffin; 10/24/24 Louisiana Gov. Jeff Landry announced last week his support for the more than 100,000 military and veteran caregivers in the state by joining the Elizabeth Dole Foundation’s Hidden Heroes Campaign. The campaign’s goal is to raise awareness and bring critical resources to military and veteran caregivers, who are referred to as hidden heroes and care for wounded, ill or injured service members and veterans. ... Currently, there are 2.3 military and veteran caregiver children and 14.3 million military and veteran caregivers who care for America’s wounded, ill, or injured veterans or service members, according to the foundation’s website. ... The 14.3 million military and veteran caregivers provide care valued at a minimum of $119 billion.

Advance Directives: How to make sure your end-of-life decisions are followed Bottom Line Inc; by Mathew D. Pauley, JD; 10/24/24 Nearly 40% of older Americans have some form of advance directives, such as a living will to communicate wishes about life-saving treatment…or a medical power of attorney appointing a loved one as proxy if they’re incapacitated.  Problem: Your wishes may not always be followed in real-world situations. Examples: Emergency paramedics typically provide CPR to restart a patient’s heart even if that patient’s living will says otherwise. And complex medical circumstances at the end of life often arise that force your loved ones to make judgment calls about what you really want. Bottom Line Personal spoke to clinical ethicist Mathew Pauley about how to make sure hospitals, medical providers and family members follow your medical wishes.

Palliative care pharmacist discusses how building relationships with patients leads to rewarding career Drug Topics - Voice of the Pharmacist; by Killian Meara; 10/22/24 A discussion with Madison Irwin, PharmD, BCPS, clinical pharmacist specialist in palliative care at University of Michigan Health and clinical assistant professor at the University of Michigan College of Pharmacy. ... Irwin currently works as a clinical pharmacist specialist in palliative care in both inpatient and outpatient settings. She supports a palliative care consult team and outpatient palliative care clinics by seeing patients who are transitioning out of the hospital or patients who have more complex medication management needs. Although there are plenty of challenges that she faces in her practice, Irwin said that really getting to know patients through her work is extremely rewarding. ... In a conversation with Drug Topics, Irwin discussed how her career has unfolded, a program that she worked on that exemplifies the value of pharmacists in patient care, opportunities out there for pharmacists to expand their role, and how high rates of chronic pain will impact the pharmacy profession in the coming years.