Literature Review

Busting palliative care misconceptions in cancer care Cure; by Alex Biese; 10/22/24 Palliative care can serve a crucial function for patients living with serious illnesses such as cancer, as an expert explained in an interview with CURE®. “Palliative care is sub-specialized health care for patients living with serious illness, where we're really focused on alleviating the symptoms and the stress associated with illness, and our goal is to improve quality of life for patients and their families,” said Dr. Cari Low of the University of Utah Huntsman Cancer Institute. ... However, some misconceptions persist regarding palliative care — most prominently that it is synonymous with hospice care. ... "We [i.e., palliative care] follow patients from the time of diagnosis through their curative cancer treatment and throughout their journey and into survivorship. ... Hospice is really focused on end-of-life care and comfort when cancer treatments no longer make sense. So, I really think of palliative care as this great big umbrella of support throughout the entire journey, where hospice is just a tiny piece of that umbrella.”

Research synthesis related to oncology family caregiver spirituality in palliative care Journal of Palliative Medicine; by Betty R. Ferrell, Tami Borneman, Marianna Koczywas, and Paul Galchutt;  10/21/24 online ahead of print Family caregivers are central to the delivery of serious illness care and also have needs related to their role and experience. One aspect of the family caregiver quality of life (QOL) that has received less attention is caregiver spirituality. The research objectives for this analysis were (1) Describe spirituality in oncology family caregivers. (2) Determine the impact of palliative care interventions on spirituality and related variables in oncology family caregivers. (3) Describe findings from the research literature related to spirituality in family caregivers. The authors include two nurse researchers (BF, TB) and a physician (MK) who conducted these studies and a board-certified chaplain (PG) who contributed his expertise in chaplaincy.  ... The authors' research synthesis and the literature support the importance of additional research and clinical focus in family caregiver spirituality in serious illness care. 

A simple question changed how I saw my daughter’s life Newsweek Life; by Nikki Moberly; 10/20/24 When my daughter was born almost 24 years ago, not only did I begin my journey as a first-time parent, I embarked on an odyssey that nobody could have prepared me for. This little girl with the face and disposition of an angel was born with a devastating condition, diagnosed at two-and-a-half months old with Aicardi Syndrome. ...  The first years of her life were laser-focused on learning more about her rare condition, symptom stabilization, medication adjustments, therapists, and doctor's appointments. Erin was eligible for early intervention services allowing her to go to school at age three. ... For one of those interviews, the social worker came to my home for us to complete Erin's "student profile" card. I was about to learn the power of a well-placed question. She started by simply asking: "What are Erin's strengths?" ... [Click on the title's link to continue this mother's journey through her daughter's life and death.]

Poetry, again, confronts death JAMA; by Rafael CAmpo, MD, MA; 10/16/24Poetry can help physicians in many ways at the border between life and death. Though we might think first of the consoling power of elegy in confronting mortality, other poems, like “Again,” [referenced] aid us in wrestling with what death is in the first place—and are even more useful when research falls short in attempting to demystify it. One such scientific controversy surrounds in-hospital resuscitation, especially for older adults, with studies showing inconsistent rates of meaningful survival after these potentially life-saving interventions, confounded by the physical and emotional trauma that accompanies them, poor understanding of patients’ and families’ wishes, unclear definitions of “meaningful,” and varying patient selection criteria. [The poem titled] “Again” distills some sense out of this complexity as only poetry can, with the urgent repetition of “again” expressing the ingrained imperative to act when patients experience cardiac arrest while echoing both the many previous resuscitations hospital staff well remember, along with the 2-beat, up-down muscle memory of performing chest compressions. ... Thus, a reflexive, futile endeavor becomes a human being’s dying moment, allowing us to feel closure. Debates around in-hospital resuscitation suddenly quieted, we recognize life’s inevitable finality, underscored by the poem’s ironically dignified resignation in its concluding line: “Never again did you wake.”Editor's note: Click here to access the poem, "Again."

Palliative medications: what works in practice for symptom control?Nursing Times; by Sally-Anne Francis, Eunice Sirkett, Emily Anderson and Sarah Yardley; 10/14/24 This article explores the real-life challenges of managing symptoms with medication at the end of life. ... Key points:

Rosalynn Carter Institute redefines caregiving field with the launch of research informed profiles of experiences of caregiving© BusinessWire - Rosalynn Carter Institute for Caregivers, Americus, GA; by Ava Jafarmadar; 10/15/24 The Rosalynn Carter Institute for Caregivers (RCI) today announced the launch of the Profiles of Experiences of Caregiving© (Caregiver Profiles©), an innovative framework that leads within the caregiver field by reimagining and elevating family caregivers, so they are better seen, understood, and supported. Developed in partnership with Duke University through an extensive review of over 10,000 research papers and comprehensive caregiver focus groups, these profiles shift the focus from the care recipient’s diagnosis to the caregiver’s unique experience. This new approach aims to provide more tailored, holistic support to the over 105 million people in the United States who are actively engaged in family caregiving. 

Care utilization for neurodegenerative diseases compared to patients with cancer Physician's Weekly; 10/14/24 Neurodegenerative diseases are a leading cause of death, yet healthcare utilization and costs during the end-of-life (EoL) period are poorly understood.  Researchers conducted a retrospective study to describe and compare resource utilization among U.S. Medicare decedents with neurodegenerative diseases and cancer. ... The results showed 1,126,799 Medicare beneficiaries, of which 357,926 had a qualifying diagnosis. Individuals with neurodegenerative diseases were older and more frequently received Medicaid assistance than those with brain or pancreatic cancer. ... The study concluded that individuals with neurodegenerative diseases were more likely to visit ED and less likely to utilize inpatient and hospice services at the EoL compared to those with brain or pancreatic cancer. 

More health care teamwork means less burnout: physician survey American Medical Association (AMA); by Georgia Garvey; 10/8/24 Physician burnout is largely influenced by workplace structure and experiences. That is where team-based and safe-care delivery can help, according to a study published in The Joint Commission Journal on Quality and Patient Safety. In the study, “Teamwork Climate, Safety Climate, and Physician Burnout: A National, Cross-Sectional Study,” 1,218 U.S. doctors nationwide were surveyed about burnout and workplace experiences, including teamwork and safety climate. ... The researchers concluded that there is a strong relationship between the amount of teamwork and safety in physicians’ work environments and burnout. It is a relationship that showed improvements on those metrics even when compared with slightly different work climates. Among the physicians surveyed, 27.4% reported high depersonalization, 39.9% reported high emotional exhaustion and 45.6% met the criteria for burnout. But even small increases in teamwork and safety climate were related to improvements in physicians’ feelings of depersonalization, burnout or emotional exhaustion.

‘It’s more like hope’: New hospice patient’s Halloween wish come true WTOC 11, Pooler, GA; by Jasmine Butler; 10/14/24 Tons of candy, a bunch of costumes and hundreds of people. That is what a neighborhood in Pooler looked like as people gathered for a Layla Alacan, who recently entered Hospice Care. “She is so sweet when she wants to be and she’ll cuddle up and give kisses, she’s the definition of a sour patch kid. She’s super sour and then super sweet after,” said Layla’s mother, Courtney Alacan. She has a big personality, but she’s fighting a big battle. Layla has a rare terminal disorder called 4H Leukodystrophy. ... It’s an experience her parents Courtney and Nick Alacan know all too well. “Our first child Jamie also had the condition. And she unfortunately passed in April of 2023,” said Alacan. So, they’re vowing to make her wildest dreams come true. ... “[We]  asked her what her favorite holiday was and she said Halloween," said Alacan. “Thinking we would have 40 or 50 kids come through and just you know, have a nice little night. Then, it blew up and now we’re here and we couldn’t be more grateful," said Alacan. An entire community, celebrating Halloween a little early but also rooting on the six-year-old with enough spunk, for them all. 

Caring for the family caregivers made ill by their work Penn LDI; by Hoag Levins; 10/11/24 A randomized controlled trial (RCT) led by LDI Senior Fellow Barbara Riegel, PhD, RN, of the University of Pennsylvania School of Nursing has identified a virtual health coaching intervention that helped lessen stress for unpaid family caregivers who often neglect their own care. Published in Circulation: Heart Failure, the study focused on unpaid family caregivers providing care to adults with chronic heart failure (HF)—a condition that occurs when the heart can’t pump enough blood for the body’s minimal needs. Because the disease has a variety of symptoms and manifestations that limit palliative care and respite services, it places a heavy burden on home caregivers who are “are commonly overwhelmed and face emotional, psychosocial, and financial risks that result in a decline in their own health and wellness.”Editor's note: Family Support Through Serious Illness is an online video library of 30 brief, state-of-the-art videos for family caregivers, used upstream in the trajectory of serious illness and through palliative/hospice care. These pair with a staff video training, "Empathy for Hospice Professionals."  These are designed and provided by Composing Life Out of Loss, a sponsor for this newsletter.

Early trauma linked to more pain and loneliness at life’s endPsychiatrist.com; by Denis Storey; 10/7/24New research [Journal of the American Geriatics Society] links early-life trauma, particularly parental abuse, to greater pain, depression, and loneliness at the end of life. The study tracked more than 6,500 older Americans and found those with five or more traumas had higher chances of pain and loneliness. Trauma can cause long-lasting biological effects, contributing to chronic conditions and mental health issues in later life. Healthcare providers are encouraged to adopt a “trauma lens” when addressing end-of-life care.

How to prepare yourself for death when given a terminal diagnosis Yahoo!Life; by Kate Ng; 10/8/24 Receiving a terminal diagnosis can be a devastating blow, for the individual and their loved ones. There is no right or wrong way to react to such news, and people respond with all sorts of emotions - from anger and denial, to acceptance and peace. Having a terminal illness can also give a person new perspective. ...

Model improved Advance Care Planning for cancer patients Cancer Therapy Advisor; by Jen Smith; 10/4/24 A machine learning survival model that selects patients for serious illness conversations can increase the rate of advance care planning and prognosis documentation for cancer patients, according to research published in the Journal of the National Cancer Institute.  The study included 33 oncologists and 22 advance practice providers. Once a month, the providers were randomly selected to receive the intervention. It consisted of weekly automated emails notifying providers about patients who were identified by the machine learning model as a high priority for serious illness conversations. Patients were categorized as high priority if they had less than 2 years to live according to the model and had no prognosis documentation. ...