Literature Review

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.

Busting palliative care misconceptions in cancer care Cure; by Alex Biese; 10/22/24 Palliative care can serve a crucial function for patients living with serious illnesses such as cancer, as an expert explained in an interview with CURE®. “Palliative care is sub-specialized health care for patients living with serious illness, where we're really focused on alleviating the symptoms and the stress associated with illness, and our goal is to improve quality of life for patients and their families,” said Dr. Cari Low of the University of Utah Huntsman Cancer Institute. ... However, some misconceptions persist regarding palliative care — most prominently that it is synonymous with hospice care. ... "We [i.e., palliative care] follow patients from the time of diagnosis through their curative cancer treatment and throughout their journey and into survivorship. ... Hospice is really focused on end-of-life care and comfort when cancer treatments no longer make sense. So, I really think of palliative care as this great big umbrella of support throughout the entire journey, where hospice is just a tiny piece of that umbrella.”

State association launches support program for home, hospice, personal care workers The Journal Gazette, Fort Wayne, IN; by Lisa Green; 10/15/24 A statewide association for home and hospice care professionals is launching a support program today with features including training and one-on-one counseling to help with workforce retention. The CARE (Creating Action and Resources for Employees) Connect program is billed as the first of its kind in the U.S., a news release said. A recent report released by MissionCare Collective indicates that caregivers are three times more likely to suffer from anxiety and depression, and 21% of caregivers nationwide self-report poor mental health. And 55% of those workers receive some form of federal or state assistance, the Indiana Association for Home and Hospice Care said in a news release announcing the new support program.

Communication gaps among clinicians may limit conversations about prognosis, hospice Healio - HemOncToday; by Jennifer Byrne; 10/16/24 Clinicians in acute or post-acute care settings may delay or avoid serious illness conversations with patients whose cancer prognoses are worsening out of deference to the patient’s oncologist, according to study findings. Researchers conducted 37 semi-structured interviews with physicians and leaders in hospital medicine, oncology, palliative care, home health care and hospice. Investigators coded and analyzed the interviews using thematic content analysis. Evaluation of the responses yielded insights into how care silos, lack of clear clinical roles and other factors may affect communication between oncologists and other clinicians. ... "We know that the 3-month window after an older adult with cancer is discharged to a skilled nursing facility can be comprised of complex medical decision making and changing preferences of care. Lack of appropriate serious illness communication during this time can result in unwanted hospitalizations and unwanted, aggressive care at the end of life."

[Sweden] Reconciliation in palliative care: A concept analysisPalliative and Supportive Care; Margareta Karlsson, Andrea Uhlman, Benedict Kämper, Britt Hedman Ahlstrom; 9/24Terminal illnesses affect almost all aspects of life and being close to death may lead to a need for reconciliation. The end of life is stressful on an existential level for both patients and relatives. It can therefore be of relevance for palliative care nurses to understand the meaning of reconciliation. We conclude that reconciliation is a concept of importance when caring for patients in end-of-life care. A broader and deeper understanding of the concept facilitates conversations about the meaning of reconciliation in palliative care and can enable patients who strive to achieve reconciliation to be more easily identified and supported.

Caring for Hindu patients at the end-of-life: A narrative review Cambridge University Press; by Brinda Raval Raniga, MD, Savannah Kumar, MD, Rebecca McAteer Martin, MD, and Craig D. Blinderman, MD; 10/3/24  This paper reviews the existing literature to identify specific challenges that may arise in the context of providing palliative and end-of-life (EOL) care for Hindu patients in the physical, psychological, and spiritual domains. We offer practical strategies where appropriate to mitigate some of these challenges. We review how the Hindu faith impacts EOL decision-making, including the role of the family in decision-making, completion of advance directives, pain management, and decisions around artificial nutrition and hydration (ANH) and cardiopulmonary resuscitation (CPR). 

How 300 terminally ill couples had their ‘perfect’ weddings thanks to this nonprofit (Exclusive) People Magazine; by Johnny Dodd; 9/28/24 "We're in the business of hope," says Wish Upon a Wedding's executive director, Lacey Wicksall. On any given day, Lacey Wicksall can be found fielding phone calls from couples across the nation who are deeply in love but are running out of time. And that’s exactly why Wicksall is talking to them. As the executive director with the Chicago-based nonprofit Wish Upon a Wedding, the 43-year-old mother of two helps provide free weddings and vow renewals to couples who are facing a terminal illness or a life-altering health circumstance. “I just got off the phone with a couple a few hours ago and I still have tears in my eyes,” says Wicksall of a recent phone call, vetting a couple who were in the process of applying for one of the nonprofit’s weddings. “We were all in tears. It’s hard.” ... Since 2009, the organization has provided nearly 300 ceremonies by working with wedding industry professionals who donate everything from catered food and wedding attire to a venue, videographers and DJs. ... Before being selected for an interview by Wicksall and “wish coordinator” Megan Biehl, they verify the applicant’s health status through their physician or hospice worker, then go to work learning more about the couple and what they envision for their special day. ...

The evolving landscape of Amyotrophic Lateral Sclerosis: A fatal disease!  Delveinsight; 9/24/24 Amyotrophic Lateral Sclerosis (ALS) is a devastating neurodegenerative disease characterized by the progressive degeneration of motor neurons, leading to muscle weakness, paralysis, and ultimately, death. ... Despite ALS being relatively rare, affecting 2-5 per 100,000 people worldwide, the question Is ALS on the rise? is gaining attention. While global prevalence has not significantly increased, improved diagnostic techniques, earlier detection, and greater awareness have led to a more accurate identification of ALS cases. Many researchers believe that enhanced surveillance and better tools for genetic testing are uncovering more cases than previously recognized, rather than a true rise in the disease’s incidence. However, with an aging global population, the burden of ALS may grow, as age is a major risk factor. Editor's note: Do you provide disease-specific training for your staff? ALS patients' and families' needs are unique. A significant disease comparison is between ALZ (Alzheimer's) and ALS. With ALZ (Alzheimer's), the brain decreases its abilities to function while the body can remain strong; the person is mobile with cognitive limitations. In contrast, with ALS, the body decreases its abilities to function while the brain/mind/emotions can remain strong. The person is immobile with cognitive awareness, but extreme physical limitations in communicating one's thoughts, emotions, and needs. ALS-specific communication tools provide crucial help for all. For more information in your location, visit The ALS Association's USA map.

Death is no enemy Psychiatric Times; by Sidney Zisook, MD; 9/17/24... As mental health clinicians, we often confine our conversations about death and dying to recognizing suicide risk and preventing suicide. And for good reason. Suicide is the 11th leading cause of death in the United States, ... Far less attention is paid by mental health clinicians to other aspects of death and dying. But we are human, first and foremost, and coping with a host of issues related to the end of life is inextricably bound to both our professional and personal lives. Like it or not, death is part of life. We, as mental health clinicians, are not always as prepared as we would like to be to help ourselves, our loved ones, our patients, and their loved ones deal with loss, dying, death, and bereavement. For many physicians, 1 or 2 hours in medical school and perhaps another few hours during residency are all the training we receive in these complex and challenging clinical issues. ...  Chochinov provides a clinician’s guide for “being with” dying patients. He offers ways of providing intensive caring to enhance empathy, respect, connectivity, and hope, and to make the experience of a dying patient more tolerable than it otherwise might be. ... I have utilized his Patient Dignity Question, which asks, “What do I need to know about you as a person to take the best care of you possible?” on several occasions with gratifying results for both the patient and me.

[Opinion] Public health’s spirituality disconnect Harvard Public Health; by Katelyn N.G. Long, David H. Rosmarin, and Howard K. Koh; 9/10/24The separation of church and state has long represented a hallowed legal principle. As a result, perhaps, the field of public health has often divorced itself from spirituality—to the detriment not only of the diverse populations we serve but also of ourselves. ... Our team from the Harvard Initiative on Health, Spirituality and Religion studies ways to bridge the public health disconnect between body and soul. As part of our commitment to research and practice, we worked in 2022 alongside several dozen colleagues nationwide to analyze the most rigorous studies published on the topic this century and to make recommendations for the future. ...

Mental health jobs to grow 3X more than the rate of all US jobs Becker's Hospital Review; by Erica Carbajal; 9/9/24 By 2033, employment growth in mental health professions is expected to triple that of average job growth in the U.S., according to a CNN analysis of data from the Bureau of Labor Statistics. While the median projected employment growth for all occupations across the next decade is 4%, the rate for mental health-related jobs is 12%. This includes psychiatrists, psychologists, therapists, counselors, psychiatric aids and social workers, according to CNN's report published Sept. 7. Editor's note: Too often, mental health health jobs in hospice and palliative care are relegated to low status on priorities for staffing, instead of the regulatory high priority for "whole-person" care defined throughout the CMS Hospice Conditions of Participation. As significant changes continue to unfold for hospice and palliative services, we will continue to report trends and shifts that emerge in the healthcare landscape for mental health jobs.  

Not intervening as a form of care: Negotiating medical practices at the end-of-life AnthroSource, by the American Anthropological Association; by Simon Cohn, Eric Borgstrom, and Annelieke Driessen; 8/27/24 ... The story of Keith, a patient living with multiple sclerosis but now with limited time left, introduces a common feature of biomedicine; once set on a particular trajectory, clinicians are often committed to a cascade of options without really questioning their ultimate value: "When I saw the doctor, the first thing he said was, ‘Oh, we can do this, or we can do that…’ So I said, ‘No, you won't. You won't do any of those things, thank you very much.’ And then when he suggested a drug that will give me ‘an extra few months’, I replied ‘Does that give me an extra few months now, or an extra few months at the end? Because I want the few months now, I don't want them at the end.’" Here, Keith recounts how his doctor seemed compelled to suggest one treatment after another with the intention of prolonging his life, rather than acknowledge that because he was dying, a different approach might be more appropriate. ...

How to recognise the dying phase in palliative and end-of-life care Nursing Times; by Julie Kinley and Cathriona Sullivan; 8/19/24This article gives practical guidance for nurses on providing care in the last days of life. ... Birth and death are two certainties in life. Consequently, during their career, many nurses will support, and indeed lead, the management of the care of dying people. ... [Knowing] how to recognise – and manage – this phase of life remains a career-long key responsibility and role. ... In any setting, nurses are part of a wider team. The recognition of dying and the dying phase can be enhanced if everyone: