Literature Review

Sasha McAllum Pilkington on grace and storytelling at the end of life Psychotherapy.net; by Lawrence Rubin; 7/22/24 Narrative Clinician, Sasha McAllum Pilkington [of New Zealand],  shares poignant stories she co-created with hospice clients which honor and celebrate their lives. [This interview includes: ...

Caregivers of end-of-life patients reveal the last words they hear most often and the most common regrets from patients WhatsNew2Day; by Alexander; 7/27/24... While each person’s final moments are different, chaplains and palliative care nurses have said most people approach their death with “radical acceptance.” People who are actively dying also often have a new sense of clarity about the universe and may even have a temporary burst of energy or sudden moments of clarity if they have dementia. The last words patients usually say to their families are to tell them they love them... [Often, people] who are in the midst of dying want to be surrounded by their loved ones and pets. Their final words are often words of love and pleas for forgiveness, as well as expressions of regret, ... [Another described that people show] "a desire for connection" with loved ones and faith. Editor's Note: This article provides a balanced scope of descriptions from several professionals, notably Catherine Duncan, Annemarie Switchulis, Neal Shah, and Zackary Price. In this day of social media, some hospice professionals (past or present) tout definitive, authoritative descriptions of what all dying persons experience, with too many assumptions and generalizations. Beware what you read and distribute, especially if the tone and language (of other articles) are sensationalized in a way to garner social media "expertise," followers and Shares--at the expense of more balanced, sensitive, diverse, personalized experiences.

Awards and Recognitions: July 2024We congratulate these honorees and celebrate their contributions to our collective hospice and palliative care mission, vision, and compassionate care throughout our world. Do you know any of these leaders? We encourage you to forward this to them or to find another way to celebrate their success. (We are piloting this as a monthly feature in Hospice & Palliative Care Today.) 

Never rob your character to enrich your pocket. ~James Lendall Basford, Seven Seventy Seven Sensations, 1897

Sunday newsletters focus on headlines and top read stories of the last week (in order) - enjoy!

Advance Care Planning: Perspectives of People Living in PrisonJournal of Hospice and Palliative Nursing; by Erin Kitt-Lewis, Nanda Zheng, Susan J Loeb; 8/24A person-centered approach to advance care planning is recognized as a fundamental need, yet its routine implementation remains a challenge across disparate settings, such as prisons. The purpose of this study was to gain the perspectives of people who are incarcerated about advance care planning... Findings contribute to identifying best practices for infusing advance care planning into prisons.

Providing clarity: communicating the benefits of palliative care beyond end-of-life supportPalliative Care and Social Practice; by Julie L Masters, Patrick W Josh, Amanda J Kirkpatrick, Mariya A Kovaleva, Harlan R Sayles; 6/24Palliative care affords numerous benefits, including improvements in symptom management, mental health, and quality of life, financial savings, and decreased mortality. Yet palliative care is poorly understood and often erroneously viewed as end-of-life care and hospice. Barriers for better education of the public about palliative care and its benefits include shortage of healthcare providers specializing in palliative care and generalist clinicians' lack of knowledge and confidence to discuss this topic and time constraints in busy clinical settings. This study offers insight into the knowledge and attitudes about palliative care among community-dwelling adults, 19 years and older living in Nebraska. More effort is needed to communicate what palliative care is, who can receive help from it, and why it is not only for people at end of life.

The Tandem VR™ protocol: Synchronized nature-based and other outdoor experiences in virtual reality for hospice patients and their caregiversContemporary Clinical Trials Communications; by O McAnirlin, J Thrift, F Li, J K Pope, M H E M Browning, P P Moutogiannis, G Thomas, E Farrell, M M Evatt, T Fasolino; 6/24Nature-based and other outdoor virtual reality (VR) experiences in head-mounted displays (HMDs) offer powerful, non-pharmacological tools for hospice teams to help patients undergoing end-of-life (EOL) transitions. However, the psychological distress of the patient-caregiver dyad is interconnected and highlights the interdependence and responsiveness to distress as a unit. Using personalized, nature-based and other outdoor VR content, the patient-caregiver dyads can simultaneously engage in an immersive encounter may help alleviate symptoms associated with declining health and EOL phases for the patient and the often overburdened caregiver. This protocol focuses on meeting the need for person-centered, non-pharmacological interventions to reduce physical, psychological, and spiritual distress.

Prognostication in hospice care: Challenges, opportunities, and the importance of functional statusFederal Practitioner - Case Reports; by David B. Brecher, MD and Heather J. Sabol, MSN, ARNP; 7/24 Predicting life expectancy and providing an end-of-life diagnosis in hospice and palliative care is a challenge for most clinicians. Lack of training, limited communication skills, and relationships with patients are all contributing factors. These skills can improve with the use of functional scoring tools in conjunction with the patient’s comorbidities and physical/psychological symptoms. The Palliative Performance Scale (PPS), Karnofsky Performance Scale (KPS), and Eastern Cooperative Oncology Group Performance Status Scale (ECOG) are commonly used functional scoring tools.

Pain Management at the End of LifeJournal of Hospice and Palliative Nursing; HPNA position statement; 8/24.Pain management is essential from the time of diagnosis of a serious illness and throughout the disease trajectory. Unfortunately, the prevalence of pain in those with serious illness remains unacceptably high. In most cases, pain experienced by people with advanced disease can be prevented or relieved through optimal care, yet studies reveal that patients continue to experience uncontrolled pain in the final weeks, days, and hours of their lives...

A good friend is cheaper than therapy.

UnitedHealth and Amedisys reach divestiture agreement in effort to complete merger  Open Minds - Industry Bulletins; 7/29/24 UnitedHealth Group and home health and hospice provider Amedisys entered an agreement to sell certain assets to a subsidiary of VitalCaring Group (VCG) as part of an effort to obtain regulatory approval for a merger first announced in June 2023.  The deal, valued at $3.3 billion, has been held up due to concerns from the Department of Justice. UnitedHealth and Amedisys declined to provide more information on the divestiture. According to an SEC filing, the deal with VCG Luna would only go through if UnitedHealth and Amedisys complete their merger. Earlier in 2024, Amedisys agreed to divest upwards.

Signs that cognitive changes are worrisome —and what you can do about it CU Anschutz (Colorado University) Department of Medicine; by Tayler Shaw; 7/26/24 ... As a geriatrician and palliative medicine physician, Hillary Lum, MD, PhD, has spent her career working to better the lives of older adults and their families, often raising awareness about what cognitive decline can look like and when it is concerning. She is currently involved in the Colorado Alzheimer’s Disease and Related Dementias State Plan, a state initiative to improve awareness and actions to address dementia in Colorado, specifically looking at how to build a competent workforce related to Alzheimer’s disease and related dementias.  We recently sat down with Lum ... to talk about what cognitive decline is, symptoms to look out for, and how people can best protect their brain health.