Literature Review

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Life can only be understood backwards, but it must be lived forwards. ~Soren Kierkegaard

Coping and end-of-life decision-making in ALS: A qualitative interview study PLoS One, University of Auckland, New Zealand; by Olga Wenzel, Anke Erdmann, Gerald Neitzke, and Irene Hirschberg; 6/26/24 How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-life care? Which correlating conditions and influences relate to these needs and how do they connect to the wish to die or wish to live? ... We identified the coping strategies ‘avoid thinking about end-of-life’ and its counterpart, ‘planning ahead to be well-prepared,’ and differentiated the latter into the patterns ‘withdrawing from life and taking precautions against life-prolongation’ and ‘searching for a new meaning in life and preparing for life-sustaining treatment’.  ... These strategies may vary over time, resulting in different support needs. Our findings signify that deep insight is needed into PALS‘ coping processes to understand their decision-making about life-sustaining treatment. Healthcare professionals should be sensitive to illness experiences beyond medical aspects and foster coping as a biographical process to better support people with ALS.Editor's Note: Click on the title to access the full text of this insightful, relevant research. Hospice and palliative educators, use this to strengthen your disease-specific resources and training about care for persons with ALS.

A palliative care curriculum may promote resident self-reflection and address moral injury The Journal of Surgical Research; by Shruti Koti, Lyudmyla Demyan, Danielle Deperalta, Sophia Tam, Gary Deutsch; 6/22/24 online ahead of print Introduction: There is a lack of formal palliative care education for surgical trainees, and the demanding nature of surgical training and exposure to challenging clinical scenarios can contribute to moral injury. We developed a palliative care curriculum to promote self-reflection, aiming to address moral injury in residents.Conclusions: The described palliative care curriculum accomplishes several goals as follows: it educates residents on palliative care topics, teaches communication tools, encourages self-reflection, and provides space for building peer relationships. The ease of implementation makes this curriculum applicable across various types of institutions, offering the potential to positively impact surgical training on a national scale.

Chronic loneliness and the risk of incident stroke in middle and late adulthood: a longitudinal cohort study of U.S. older adults eClinical Medicine, Part of THE LANCET Discovery Science; by Yenee Soh, Ichiro Kawachi, Laura D. Kubzansky, Lisa F. Berkman, and Henning Tiemeier; 6/24/24 Loneliness has been implicated as a stroke risk factor, yet studies have examined loneliness at only one time point. The association of loneliness changes and risk of incident stroke remains understudied. Our aim was to examine the association of loneliness with incident stroke, particularly the role of loneliness chronicity. Chronic loneliness was associated with higher stroke risk independent of depressive symptoms or social isolation. Addressing loneliness may have an important role in stroke prevention, and repeated assessments of loneliness over time may help identify those particularly at risk.Editor's Note: This is the source research for an article we posted yesterday, 6/28/24, titled 

California hospice ownership changes from 2018-2020: A spatial analysis and case illustrationAmerican Journal of Hospice and Palliative Care; by Heather A. Davis, PhD, Christy Torkildson, PhD, RN, PHN, FPCN, HEC-C, Lisa C. Lindley, PhD, RN, FPCN, FAAN; 6/24Hospices in California have undergone significant and complicated ownership changes in recent years. ... Our findings showed that ownership changes were significant and complicated. An influx of for-profit organizations into the California market was primarily responsible for these changes. Additionally, lack of corporate financial public disclosure and voluntary hospice accreditation, certification, and reporting result in a lack of free, publicly available, definitive comprehensive data on for-profit hospice ownership. This hinders information gathering on and provider/familial choice-making regarding hospices. Our study provides critical insight into the impact of ownership changes and lack of definitive, free, publicly available information on adult hospices in California caring for children and has important clinical, research, and policy implications.

How do enrollees feel about support in Big Hospices? - The caregiver experience of emotional, spiritual, and bereavement support by profit status among large US providersPalliative and Supportive Care; by Jason T Hotchkiss, Emily Ridderman, Brendan T Hotchkiss; 4/24Recent findings narrate profiteering detrimentally impacting hospice care quality. However, no study has examined the caregiver experience of emotional and spiritual support expressed online. The purpose was to evaluate the hospice caregiver's experience of emotional, spiritual, and bereavement support and whether the care was respectful and compassionate to the care unit. ... Compassionate professionals were thanked and praised regardless of profit status. Sadly, anger was expressed toward large, for-profits more fixated on census than emotional, spiritual, and bereavement support; thankfully nonprofits were more supportive.

Travel is fatal to prejudice, bigotry, and narrow-mindedness. ~Mark Twain

Experiencing and enduring patient distress: the distress of palliative care patients and its emotional impact on physicians in trainingBMC Medical Education; by Andréa Tarot, Maxence Pithon, Ashley Ridley, Virginie Guastella, Virginie Guastella, Morgane Plancon, Régis Aubry, Helène Vaillant Roussel, and Axelle Maneval; 6/26/24The extreme vulnerability experienced by patients in palliative care may result in significant distress. These patients require appropriate care while not pathologizing their natural distress. ... [The] aim of this study was to explore how professionals in training feel when confronted with the distress of patients undergoing palliative care. ... The interviews revealed the following five themes:

Chronic loneliness can raise stroke risk in older adults, findings show McKnights Long-Term Care News; by Kristen Fischer; 6/24/24 A new study links loneliness to stroke risk, showing that those who are regularly lonesome have a 56% higher risk for stroke than those who are more socially connected. Situational loneliness wasn’t linked to a higher risk for stroke, which indicates that the stroke risk stems from chronic loneliness. Investigators led by a team from Harvard T.H. Chan School of Public Health published their report Monday in eClinicalMedicine. Research has already linked loneliness to an increased risk for cardiovascular disease. The new report is one of the first to evaluate the association between loneliness and stroke risk.

KCAD grad Brianna L. Hernández explores intersection of art, death, and grief through prestigious Hyperallergic curatorial fellowship Ferris State University, Grand Rapids, MI; 6/25/24 As Brianna L. Hernández grieved the loss of her mother, she understood she was not alone in the experience and her thoughts turned to helping others. Her work to share the experience has earned recognition. Hernández, a 2016 graduate of the Kendall College of Art and Design of Ferris State University, was one of five people selected for the prestigious 2024 Emily H. Tremaine Journalism Fellowship for Curators ...  Every year, the fellowship offers five curators $5,000 to support their research while developing their journalistic skills. ... [Experiencing her mother's death] profoundly shifted her work toward a focus on death, and the living who are left behind to cope with loss. “As she was dying and right after she died, I knew I needed to make work about it for my own healing, but I also knew that my situation was not unique,” Hernández said. “I felt like it was of both artistic and social importance to put that out there in a way that hasn't been addressed.”