Literature Review

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."

Communication gaps among clinicians may limit conversations about prognosis, hospice Healio - HemOncToday; by Jennifer Byrne; 10/16/24 Clinicians in acute or post-acute care settings may delay or avoid serious illness conversations with patients whose cancer prognoses are worsening out of deference to the patient’s oncologist, according to study findings. Researchers conducted 37 semi-structured interviews with physicians and leaders in hospital medicine, oncology, palliative care, home health care and hospice. Investigators coded and analyzed the interviews using thematic content analysis. Evaluation of the responses yielded insights into how care silos, lack of clear clinical roles and other factors may affect communication between oncologists and other clinicians. ... "We know that the 3-month window after an older adult with cancer is discharged to a skilled nursing facility can be comprised of complex medical decision making and changing preferences of care. Lack of appropriate serious illness communication during this time can result in unwanted hospitalizations and unwanted, aggressive care at the end of life."

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. 

‘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. 

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.

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. ...

There’s still joy in end-of-life care The Seattle Medium, Seattle, WA; by Anissa Durham; 10/3/24 Caregiving is an act of love and sacrifice. But for young Black women, it’s often summed up as just being “a good daughter.” More than 100 million Americans provide care to a child, parent, or relative. And about half provide care to a spouse, elderly parent or relative, or special needs child, according to a report by Guardian. But for Black folks, the burden of doing so is often heavier. Due to disparities in education, housing, and nutrition, and less access to health insurance, — along with the “weathering” that accompanies racism-related stress — Black Americans experience higher risk and rates of chronic disease. Which means, Black folks may get sick sooner than their counterparts and make younger generations, often women, more likely to become caregivers. In a 2021 report, Black family caregivers represent 14% of the estimated 48 million unpaid family caregivers in the U.S., with Black women making up a little more than half of this group, according to the American Society on Aging. Overall, women are two times more likely than men to say they’ve left the workforce to keep up with caregiving responsibilities. And nearly 50% of caregivers are either Millennials or Gen Z, according to the Guardian report. 

Hospitalists use POLST to initiate patient conversations about care goals The Hospitalist; by Larry Beresford; 10/1/24 Physician orders for life-sustaining treatment (POLST) is a single-page medical order form, typically printed on bright pink paper, and signed by a physician, nurse practitioner, or physician assistant to spell out treatment preferences for a seriously ill or frail patient. It is also a process for exploring those preferences in conversation with patients and then communicating them to those who might need to know, such as EMS personnel, in some future medical emergency when the patients can no longer speak for themselves. And, said Steven Pantilat, MD, FAAHPM, MHM, a former clinical hospitalist and the inaugural chief of the division of palliative medicine at the University of California San Francisco, it is “solidly within what hospitalists can and should be doing.” That may involve meeting and talking with patients and their families about their values and treatment preferences, reviewing any existing POLST forms, and even filling out and signing a form.