Literature Review

Emory University receives $3.1 million NIH grant to improve quality of life for people with cystic fibrosis Emory University, by Brian Katzowitz; 4/16/24... A new five-year, $3.1 million grant from the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH) will help Emory researchers undertake a novel study combining biological, social, and clinical research methods to better understand the underlying processes of these symptoms – and identify opportunities to improve quality of life. ... Dio Kavalieratos, PhD, [is the] director of research for the Emory Palliative Care Center and the study’s principal investigator ... 

“To prescribe or not to prescribe, that is the question”: Perspectives on opioid prescribingfor chronic, cancer‐related pain from clinicians who treat pain in survivorshipCancer, by Hailey W Bulls, Megan Hamm, Julia Wasilewski, Donna Olejniczak, Sarah G Bell, Jane M Liebschutz; 4/24Opioid pain management in cancer survivorship is a complex and understudied topic. ... Participants suggested that opportunities to improve chronic cancer pain care include developing clear, systematic guidance for chronic cancer pain management, facilitating clinician communication and consultation, creating tailored survivorship care plans in partnership with patients, and developing accessible, evidence-based, complementary pain treatments.

A process evaluation of a palliative care social work intervention for cancer patients in skilled nursing facilitiesJournal of Palliative Medicine, by Sarguni Singh, MD; Ashley Dafoe, MA; Dana Lahoff, LCSW; Laurel Tropeano, LCSW; Bree Owens, LCSW; Erin Nielsen, LCSW; John Cagle, MSW, PhD; Hillary D. Lum, MD, PhD; Brooke Dorsey Holliman, PhD; Stacy Fischer, MD; 4/24Assessing and Listening to Individual Goals and Needs (ALIGN) is a palliative care social work intervention that aims to improve delivery of goal-concordant care for hospitalized older adults with cancer discharged to skilled nursing facilities. ... ALIGN offers support in prognostic understanding, communication, and decision making during a pivotal time when patient and caregivers' goals have not been met and they are reassessing priorities.

Addressing challenges with sedation in end-of-life careJournal of Pain and Symptom Management, by Columba Thomas, MD; Yesne Alici, MD; William Breitbart, MD; Eduardo Bruera, MD; Liz Blackler, MBE, LCSW-R; Daniel P. Sulmasy, MD, PhD; 4/24Unfortunately, little is known about actual sedation practices at the end of life in the United States. This may be due in part to a lack of conceptual clarity about sedation in end-of-life care. We argue that, until more is known about what sedation practices occur at the end of life, and how practices can be improved by research and more specific guidelines, “palliative sedation” will remain more misunderstood and controversial than it might otherwise be. 

Exploring parent experiences with early palliative care practices in the NICUAdvances in Neonatal Care, by Megan Quinn, Sheila Gephart, Janice Crist; 4/24Parents' descriptions of decision-making were contextualized in gathering information to make a decision, the emotional impact of the decision, and influences on their decision-making. In experiences with care planning, parents described learning to advocate, having a spectator versus participant role, and experiencing care planning as communication. Key themes expressed regarding parental coping were exposure to trauma, survival mode, and a changing support network.

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 

HPNA and HPNF President's message : My path to leadershipJournal of Hospice & Palliative Nursing, by Lynn Reinke; 4/24Reflecting on my professional life, I recall several seminal experiences that made me believe I possessed basic leadership skills and that encouraged me to develop them. I advanced my skills in 3 ways:

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.

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.]