Literature Review

We are not okay: Moral injury and a world on fireAmerican Journal of Bioethics, by Keisha S. Ray; 4/24Moral injury gives name to a feeling that I have been having lately as I’m asked to show up to work and my life as if there aren’t people who didn’t wake up today because of violence, disease, and greed. I’ve celebrated holidays and my own professional accomplishments, but I can’t escape that lump in my throat, that nagging feeling that this is all meaningless given the state of the world. After all, my principles won’t feed the starving, shelter the bombed, free the captive, or care for the sick. I don’t have the answer. I do not know what we are supposed to do about our perpetual moral injury. I do find some comfort in the origins of moral injury—calling out a broken system rather than broken individuals (Talbot and Dean Citation 2018). I am not broken; I am just a bioethicist and a human forced to work and live within a broken world.

The HAP Foundation conducts research study on Black Americans’ experience with serious illness care in ChicagoThe HAP Foundation, by Rachel French; 4/9/24 The HAP Foundation and NORC at the University of Chicago have completed a joint research project to understand the knowledge, attitudes, and experiences of Black Americans around serious illness care in Chicago. Through a community-based participatory research design, narratives from Black individuals living in Chicago were captured by focus groups and in-depth interviews. “Community-Based Study: Prioritizing Dignity and Respect in End-of-Life Care for Black Chicagoans” is being distributed widely to health care providers and the community to encourage conversations and create change in behavioral patterns during end-of-life care.Editor's Note: Click here for this downloadable, 17 page booklet.

How a CU biostatistician is helping improve palliative care research University of Colorado - Anschutz Medical Campus, by Tayler Shaw; 4/3/24 

Wide variation in differences in resource use seen across conditions between Medicare Advantage, Traditional MedicareHealth Affairs, by Jeah Jung, Caroline S. Carlin, Roger Feldman, Ge Song; 9/23Medicare Advantage (MA) is a rapidly growing source of coverage for Medicare beneficiaries. Examining how MA performs compared with traditional Medicare is an important policy issue. We analyzed national MA encounter data and found that the adjusted differences in resource use between MA and traditional Medicare varied widely across medical conditions in 2019.

Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over timeSupportive Care in Cancer, by Maureen Wilson Genderson, Maria D. Thomson, Laura A. Siminoff; 10/23Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver’s physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear; effects may be exacerbated at the end of life when caregiving is intensified. Not all caregivers have the support of an additional involved support person (secondary caregiver). The impact of the secondary caregiver’s absence on the primary caregiver’s well-being is understudied.

Neuropsychiatric effects associated with opioid-based management for palliative care patientsCurrent Pain and Headache Reports, by Alan D Kaye, Kylie Dufrene, Jada Cooley, Madeline Walker, Shivam Shah, Alex Hollander, Sahar Shekoohi, Christopher L Robinson; 4/24The abundance of opioids administered in the palliative care setting that was once considered a standard of care is at present necessitating that providers evaluate patients for unintentional and deleterious symptomology related to aberrant opioid use and addiction. ... By having an increased understanding and awareness of potential opioid neuropsychiatric effects, patient quality of life can be improved, healthcare system costs can be decreased, and patient outcomes can be met and exceeded.

Do end-of-life outcomes differ by assisted living memory-care designation?Journal of the American Geriatric Society, by Xiao Joyce Wang, Portia Y Cornell, Emmanuelle Belanger, Kali S Thomas; 4/24Residential care/assisted living (RC/AL) is an increasingly common place of end-of-life care for persons with Alzheimer's disease and related dementia (ADRD), who have unique care needs as their health declines. Approximately 22% of RC/ALs provide specialized memory care (memory-care RC/AL). Understanding how end-of-life outcomes differ by memory care among residents with ADRD could facilitate aging/dying in place for this population. The objective of this paper is to examine if end-of-life outcomes (i.e., mortality, hospice use, and number of days receiving hospice in the last month of life) differ between residents with ADRD who moved to memory-care RC/AL, compared with residents with ADRD who moved to RC/AL without memory care (general RC/AL).

Bereaved Parent Support Study: Seeking Participants Sylvester Comprehensive Cancer Center/University of Miami Miller School of Medicine, Memorial Sloan Kettering Cancer Cancer, St. Jude Children's Hospital, and Children's Hospital of Philadelphia; 4/2/24This program is offered as a research study examining three types of support for bereaved parents who have lost a child to cancer. The study is jointly sponsored by Sylvester Comprehensive Cancer Center/University of Miami Miller School of Medicine, Memorial Sloan Kettering Cancer Cancer, St. Jude Children's Hospital, and Children's Hospital of Philadelphia; however, families need not have received care from one of these institutions. ...The counseling will be provided through videoconferencing and all activities for this study can be completed in [the participant's] home. ... There will be no charge for any support offered through the study. [Click on the title's link for more information.] 

Top ten tips palliative clinicians should know about rural palliative care in the United StatesJournal of Palliative Medicine, by Jack Kimball, Chamika Hawkins-Taylor, Anne Anderson, Debra Gay Anderson, Mary Lou Clark Fornehed, Patricia Justis, Nasreen Lalani, Sarah Mollman, Brandi Pravecek, Julie Rice, Janelle Shearer, Dillon Stein, Salom M. Teshale, and Marie A. Bakitas; 3/24Palliative care improves outcomes, yet rural residents often lack adequate and equitable access. This study provides practical tips to address palliative care (PC)-related challenges in rural communities. Strategies include engaging trusted community partners, addressing cultural factors, improving pediatric care, utilizing telehealth, networking with rural teams including caregivers, and expanding roles for nurses and advanced practice providers.

Is caregiver sleep quality an important clinical issue?Sleep and Biological Rhythms, by Ayfer Durak, Nezahat Muge Catikkas; 3/24Sleep quality is directly related to general health and quality of life. Caregivers' sleep disturbances affect not only their own health, but also the optimal care of their patients, with negative consequences such as neglect and medication errors. This study was conducted prospectively in the palliative care unit. ... The fact that the sleep quality of family group caregivers is worse than that of paid caregivers may prevent healthy medical service delivery.

Physicians, spirituality, and compassionate patient careNew England Journal of Medicine, by Daniel P Sulmasy; 3/24The past few decades have seen an international revival of interest in the role of spirituality in patient care. ... I believe this trend is salutary for patients and health care professionals alike. Yet the success of a biopsychosocialspiritual approach to 21st-century health care will depend on careful attention to ethical guidelines and boundaries in our increasingly pluralistic world.

Karen Bullock honored for Outstanding Contributions to Diversity in Palliative MedicineWomen in Academia Report; 3/24As an endowed professor at Boston College and scholar at the Dana Farber Cancer Institute, Dr. Bullock’s new award honors her dedication to improving care for underrepresented patient populations in hospice and palliative medicine.