Literature Review

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.