Literature Review

Dementia decisions: Making tough choices about hospice, palliative care Being Patient; by Katy Koop; 6/25/24 In the later stages of Alzheimer's, palliative and hospice care can be necessary. But how do you find a facility designed for dementia patients? ... Dr. Maribeth Gallagher, director of Arizona’s Hospice of the Valley dementia program, joins Being Patient video reporter Mark Niu to discuss how to make these difficult decisions and what makes a palliative or hospice care program “dementia-capable.” Gallagher’s work directing the Hospice of the Valley’s dementia program has received national and international awards for its innovative approaches. Her focus on dementia care was initially inspired by her personal experiences as a family caregiver, sharing the journey with her loved one from diagnosis to death. [Click on the title's link for the full conversation, in both audio and text.]

Hospice of Marion County trains first responders to care for dementia patients Hospice News; by Jim Parker; 6/18/24 Florida-based Hospice of Marion County, an affiliate of Empath Health, is training first responders in its community on how to treat dementia patients. For several years, the nonprofit hospice has been educating family caregivers and others in their community about the experiences of dementia patients and how to better interact with them. More recently, Hospice of Marion County [Ocala, Florida] has been expanding that training to include local law enforcement and fire departments, as well as medical students and staff at assisted living facilities, among others. The training uses a series of tools to simulate symptoms of dementia, related to visual, tactile, auditory senses, their ability to process information and perform certain tasks. The education helps first responders address the unique challenges associated with caring for dementia patients, according to Dr. Mery Lossada, chief medical officer of Hospice of Marion County.Editor's Note: Bravo, Hospice of Marion County!

The Aging Revolution: Growing old in America becoming more dignified, but with senior population booming, is nation’s health system prepared?BusinesssWire; 6/4/24A half-century after renowned gerontologist, psychiatrist and author Dr. Robert Butler ridiculed the nation’s medical establishment for ignoring the suffering of older Americans, Northwell Health today announced the publication of The Aging Revolution: The History of Geriatric Health Care and What Really Matters to Older Adults, which chronicles the significant advancements made in improving the physical and emotional health of the nation’s rapidly aging population. 

19 myths about dying people need to stop believing Million Dollar Sense; by Anuradha Supun; 5/29/24 

From caregiving to mourning: Navigating the end of the road as a family caregiver The San Diego Union-Tribune; by Lauren J. Mapp; 5/21/24 ... Losing a loved one is universally challenging, but for family caregivers who dedicated themselves to their care, the loss can be especially complicated. When a loved one dies, family caregivers often find themselves grappling with a whirlwind of emotions, from sorrow and grief to relief and sometimes guilt. This emotional roller coaster is compounded by the physical and emotional toll of providing round-the-clock care. ... A significant aspect of the grieving process for family caregivers is the transition from the role of caregiver to that of mourner. This shift can be jarring for many, as their identity may have been closely tied to their caregiving responsibilities. ... Editor's Note: For 24/7 online education for family caregivers throughout their trajectory of serious illness thorhrough hospice care and their bereavement journey, visit our sponsor Composing Life Out of Loss's Video Libraries. 

Paris in spring, Bali in winter. How ‘bucket lists’ help cancer patients handle life and death The Conversation; by Vivan Lam; 5/8/24 In the 2007 film The Bucket List Jack Nicholson and Morgan Freeman play two main characters who respond to their terminal cancer diagnoses by rejecting experimental treatment. Instead, they go on a range of energetic, overseas escapades. Since then, the term “bucket list” – a list of experiences or achievements to complete before you “kick the bucket” or die – has become common. ... But there is a more serious side to the idea behind bucket lists. One of the key forms of suffering at the end of life is regret for things left unsaid or undone. So bucket lists can serve as a form of insurance against this potential regret. The bucket-list search for adventure, memories and meaning takes on a life of its own with a diagnosis of life-limiting illness. Editor's Note: Health acuity (especially for hospice patients), finances, and other practical factors can prevent acutalization of the person's bucket list wishes. Yes, fulfilling items can happen! And when not possible (perhaps the most common response), the clinician's sensitive presence, validation of the person's hope, and gentle exploration of why it matters can bring relevant, meaningful support. Involving family members (with the patient's permission) can inspire other generations to fulfill the person's wish, bringing new purpose to mourning and grief-restoration processes ahead.

What every family should know about navigating hospice care: The keys to experiencing a peaceful, gentle, and dignified death Psychology Today; by Bob Uslander, MD; 5/7/24... As a physician with 35 years of experience, including 25 years as an emergency physician and 10 years as a palliative and end-of-life care specialist, I've witnessed firsthand the stark realities of palliative and hospice care.  ... Let me be clear: Hospice care is an enormous benefit to many people, and I am often awed by the level of compassion and commitment I witness among some hospice staff I encounter. Despite this, there are many gaps, the care can be inconsistent, and hospice care is frequently not the appropriate option for people who are encouraged down that path.

Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians Cambridge University Press; by Eran Ben-Arye, Noah Samuels, Yael Keshet, Miri Golan, Erez Baruch, and Jama Dagash; 4/8/24 Objectives: The study examines perspectives of patients in home hospice care; their informal caregivers; palliative health-care providers (HCPs); and family physicians, all regarding patients’ unmet needs and quality of life (QoL)-related concerns.Conclusions: While the 4 groups were similar in their scoring of patient QoL-related concerns, there were discrepancies for some concerns (e.g., patient fatigue) and expectations regarding the need to discuss emotional and spiritual concerns, including on death and dying. Educational initiatives with programs providing training to all 4 groups may help bridge this gap, creating a more open and collaborative hospice care environment.

The spectrum of end-of-life experiences: A tool for advancing death educationOmega; by Shared Crossing Research Initiative; 3/24 Abstract: Studies on end-of-life experiences (ELEs) suggest that caregivers and loved ones of dying patients also have ELEs, though these are rarely explored. This article introduces the Spectrum of End-of-Life Experiences (SELE) as a descriptive list of types of ELEs reported by all members of the care unit, including dying patients, their caregivers, and their loved ones. We applied SELE towards identifying ELEs reported by 143 caregivers and loved ones and successfully identified every experience. Interviews revealed that participants viewed their ELEs as profound communicative events, yet a substantial minority also reported struggling to name and process these experiences. We propose that SELE be included in death education to raise awareness about ELEs that can occur within the care unit, and we suggest that SELE has additional applications, including use as a prognostic aid in end-of-life care and as a therapeutic aid for bereavement support.

Increasing Hospice CAHPS scores through enhanced caregiver training Hospice News, by Jim Parker; 4/19/24 Improving education and training for family caregivers may give hospices’ quality scores a boost. Maryland-based Hospice of the Chesapeake has introduced a standardized caregiver training program designed to enhance the work they had previously done in this area. After a review of scientific literature, it became clear that nationally, caregiver training was spotty, and this affected families’ perceptions of the care their loved one received, Monica Ferebee, clinical manager of hospice at Hospice of the Chesapeake ... More than 70% of hospice patients are primarily cared for by untrained family caregivers with no medical background, Ferebee found. She led Chesapeake’s change project to address these concerns, and thereby improve performance on Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys. 

Fall prevention for the elderly: 13 strategies to keep them safe U.S. News & World Report, by Claire Wolters, ed. by Christine Comizion, MPH; 3/26/24Falls are the leading cause of injury in adults 65 and older – with reports showing about 14 million adults fall each year, according to the Centers for Disease Control and Prevention. ... According to the CDC, falls are also the leading cause of injury-related death in the 65-and-older population – and the fall death rate is growing.Here's what to know about what increases risk for falls in older adults, and get familiar with fall prevention tips and safety measures that can help reduce the risk.Editor's Note: This U.S. News article primes the pump. Preventing falls matters especially for vulnerable hospice patients as their disease progresses, and as they and/or family want the person to be as mobile as possible. What do your Incident Reports tell you about falls? What falls-specific education do you provide for your interdisciplinary teams? On-call staff? Family caregivers? Volunteers? What QAPI programs have addressed falls? 

Meaningful conversations to have with your loved oneMediaFeed.org, by Merritt Whitley; 3/27/24“One of the most important concepts in the field of grief and loss is that people drift in and out of the awareness of dying,” says Kenneth Doka, a senior consultant to the Hospice Foundation of America, and professor emeritus of gerontology at the graduate school of The College of New Rochelle. “Sometimes they do talk about it, sometimes not. The dying one should control the agenda. Don’t force conversations on them.” When your loved one feels ready to talk, the following suggestions can be comforting ways to begin a conversation: ...

Signs of end-stage Parkinson's disease Medical News Today; Medically reviewed by Heidi Moawad, MD, by Meara Withe; 3/18/24... Understanding the signs of end-stage Parkinson’s disease is crucial for patients, caregivers, and healthcare professionals alike. This article explores the physical health, mental health, and emotional dimensions of end-stage Parkinson’s, shedding light on what to expect and how to provide compassionate care during this demanding phase. Editor's Note: Hospice and palliative non-medical interdisciplinary team members need to understand disease-specific factors related to the patient's experience and the family caregiver's challenges. These include social workers, chaplains, counselors, and caregiver-oriented volunteers.