Literature Review

Alzheimer’s history on maternal side linked to higher disease risk, study finds McKnights Long-Term Care News; by Kristen Fischer; 6/17/24 People with a history of Alzheimer’s disease on their mother’s side or both parents’ sides of the family had higher levels of amyloid plaques in their brains compared to those with fathers who had the disease, according to a study published Monday in JAMA Neurology. Increased amyloid, a biomarker for Alzheimer’s disease, was also found in those whose fathers had early onset of symptoms. But it wasn’t as high as in people who had higher amyloid on their mothers’ side of the family, the data showed. Mass General Brigham researchers used amyloid imaging on 4,413 cognitively unimpaired adults who were between 65 and 85. 

When your parents die: Becoming an adult orphan The Montecito Journal; by Deann Zampelli; 6/18/24 Shortly after I got married, my 64-year-old mother lost her battle with breast cancer. Seven years later my father joined her. The loss isn’t any less painful just because you are a grown-up. ... Many don’t realize that grief isn’t linear. We don’t go through a neat little phase, checking off each stage as we complete it. The famous (and somewhat debunked) five stages of grief introduced by Elisabeth Kübler-Ross in the 1960s (Denial, Anger, Bargaining, Depression, Acceptance) were from a study she did on the emotional states of patients who were dying. It was their stages she was referencing, not ours. ... I came to a frightening realization. ...  It suddenly dawned on me that my siblings and I were next in line to kick it. [Click on the title's link to continue reading.]Editor's Note: While serving in your hospice leadership roles, you experience the ongoing aging, changes and likely even deaths of your own family members, friends, and mentors. Do you, your hospice communications, and/or your grief services rely on the outdated "Stages of Grief" model? These "stages" opened the door in the 1960's for talking about death and dying, but became overpopularizd for surviving and healing after the loss. These have been replaced with extensive bereavement/loss/grief research, clinical best practices, and more. For expert information, resources, and bereavement professionals, examine www.adec.org,  the Association for Death Education and Counseling. 

New AMA president says he's ready to take on big challenges facing doctors amid payment cuts and rising burnout rates Fierce Healthcare; by Emma Beavins; 6/13/24 Bruce Scott, M.D., took the reins of the American Medical Association (AMA) for his first full day on Wednesday, June 12, succeeding immediate past president Jesse Ehrenfeld, M.D. ... During his tenure, Scott said he wants to emphasize the things that unite providers rather than the things that divide them. ... Some of the AMA’s biggest policy priorities include reducing prior authorization, bolstering Medicare payments for physicians and tamping down on increased scope of practice by non-physician providers. Scott said he hopes to follow in the steps of Ehrenfeld in engaging policymakers on these topics. In addition to banding together on those cross-discipline issues, Scott wants to advocate for rural clinics. 

Telehealth can broaden reach of palliative care for lung cancer patients, per MGH study MedCity News; by Frank Vinluan; 6/16/24 Palliative care provided by video was equivalent to in-person visits with a clinician, according to study results presented during the recent annual meeting of the American Society of Clinical Oncology. Investigators say these results indicate telehealth can make palliative care accessible to more cancer patients. ... Guidelines of ASCO and other professional organizations recommend integrating palliative care from the time of a diagnosis of advanced cancer. Nevertheless, many patients don’t get this care, Greer said. On the clinician side, there are not enough specially trained palliative care clinicians, he explained. From the patient perspective, living in a rural area or lacking transportation can make it difficult to access such care.

Spousal caregivers need emotional support before losses, not just after, study findsMcKnight's Long-Term Care News; by Donna Shryer; 6/9/24A recent study suggests that healthcare professionals and policymakers should expand their focus on supporting the emotional well-being of individuals whose spouses have dementia, especially in the years leading up to their partners’ deaths. The clinical investigation, published in the Journal of the American Geriatrics Society, indicates that these caregivers experience heightened levels of psychological distress compared to those whose partners have normal cognitive function. ... After the partner’s death, the levels of loneliness and depression were similar across all groups, regardless of the deceased partner’s cognitive status. This suggests that the period before the loss is particularly challenging for those caring for a spouse with dementia. Furthermore, about two-thirds (64%) of these spouses reported lower life satisfaction compared to nearly three-quarters (74%) of those with cognitively healthy partners. However, the study found no significant difference in social isolation levels among the groups.

"A wholeness that grows out of that which is lacking": Providing palliative care to patients with anorexia nervosaPsychiatric Times; by Rabbanit Allissa Thomas-Newborn, BCC; 6/13/24Sitting with the patient, I brought in a nesting doll, separating each doll and lifting the layers of self that surrounded the smallest version of herself within. We spoke about layers. Layers and walls we put up to protect ourselves. Layers that hide the things we are afraid for anyone—worst of all, ourselves—to see. Layers that embrace and comfort and hold us together. ... With the fullness of the nesting doll displayed, we gave witness to her story together. ... To see ourselves as stories of wholeness growing out of that which is lacking requires that we accept what is lacking without judgment. We do not need to fix or fill whatever is lacking, or to pretend it is not there. It is there and may always be there. And there is a wholeness that can still grow. Editor's Note: Rabbanit Thomas-Newborn is a board-certified chaplain at New York-Presbyterian Columbia University Irving Medical Center and Morgan Stanley Children’s Hospital. She specializes in Behavioral Health, Palliative Care, and Critical Care chaplaincy. She is the president of Neshama: Association of Jewish Chaplains. 

Hope in oncology: Where art and science collide Medscape; by Sharon Worcester, MA; 6/12/24 Carlos, a 21-year-old, laid in a hospital bed, barely clinging to life. Following a stem cell transplant for leukemia, Carlos had developed a life-threatening case of graft-vs-host disease. But Carlos' mother had faith. "I have hope things will get better," she said, via interpreter, to Richard Leiter, MD, a palliative care doctor in training at that time. "I hope they will," Leiter told her. "I should have stopped there," said Leiter, recounting an early-career lesson on hope during the ASCO Voices session at the American Society of Clinical Oncology (ASCO) 2024 annual meeting. "But in my eagerness to show my attending and myself that I could handle this conversation, I kept going, mistakenly." ... Carlos' mother looked Leiter in the eye. "You want him to die," she said. ...Editor's Note: Click on the title's link to continue reading this insightful reflection and discussion about the importance of "hope." Engage your oncology/palliative/hospice chaplains (hopefully CPE trained and Board Certified) with your medical team members to explore this core belief in "hope." Alert: AI referrals for palliative and hospice care are increasing exponentially. Clinicians must be sensitive to the human dimensions and dynamics of "hope" (which shift and change), and not be driven just by technological data.

Navigating Aging: New help for dealing with aggression in people with dementia Northern Kentucky Tribune; by Judith Graham, KFF Health News; 6/9/24Caring for older adults with dementia is stressful, especially when they become physically or verbally aggressive, wander away from home, develop paranoia or hallucinations, engage in inappropriate or repetitive behaviors, or refuse to let caregivers help them. Upward of 95% of patients experience these neuropsychiatric symptoms of dementia, which tend to fluctuate over time and vary in intensity. They’re the primary reasons people with dementia end up in assisted living facilities or nursing homes. At some point, families and friends trying to help at home simply can’t manage. “When people think about dementia, they usually think about forgetfulness and memory impairment,” said Mary Blazek, director of the geriatric psychiatry clinic at the University of Michigan. “But it’s behavioral and psychological disturbances that are most disruptive to patients’ and caregivers’ lives.”

Managing palliative care challenges for patients with complex symptoms Pharmacy Times; 6/7/24In an interview with the Pharmacy Times, Justin Kullgren, PharmD, FAAHPM, Palliative Medicine Clinical Pharmacist Specialist and PGY2 Pain Management & Palliative Care Residency Program Director at The Ohio State University Wexner Medical Center, James Cancer Hospital, shares insights into palliative care and common challenges faced by pharmacists treating patients with complicated symptoms. ... Pharmacy Times: What do you wish pharmacists understood about hospice and palliative care in terms of patient care for patients with complicated symptoms? Kullgren: So, I think, number 1, pharmacists across all healthcare systems, in the hospital, at community pharmacies, long-term care, you are all going to be involved in these patients— it’s just to what degree. ... We want to do those therapies that ... are going to have the least amount of risk for our patients, or at least side effects for our patients. ...

Design, creation, and 13-month performance of a novel, web-based activity for education in primary cardiology palliative care Journal of Pain and Symptom Management; by Jill M Steiner, Caroline L Doherty, Jill A Patton, Jadry Gruen, Sarah Godfrey, John Mulrow, Richard A Josephson, Sarah J Goodlin; 6/5/24 online ahead of print Cardiovascular disease (CVD) clinicians who care for seriously ill patients frequently report that they do not feel confident nor adequately prepared to manage patients' palliative care (PC) needs. With the goal, therefore, of increasing PC knowledge and skills amongst interprofessional clinicians providing CVD care, the ACC's PC Workgroup designed, developed, and implemented a comprehensive PC online educational activity. This paper describes the process and 13-month performance of this free, online activity for clinicians across disciplines and levels of training, "Palliative Care for the Cardiovascular Clinician" (PCCVC).Editor's Note: Reiterating, this "free, online activity [is] for clinicians across disciplines and levels of training." The trajectories for cardiovascular diseases can elicit enormous anxiety--due to their roller-coaster changes that can result in sudden death--in contrast to the more predictable trajectories for cancer. Whether you use this resource or another, educate your interdisciplinary clinical managers and team members to the all-important disease and care factors for cardiology palliative care, relevant to the scope of professionals' different roles. 

Rural pharmacy owners say it's getting harder to stay open Times West Virginian; by Devi Shastri; 6/5/24 Rural pharmacies can be a touchstone for their communities. The staff knows everyone’s names and drugs, answers questions about residents’ mail-order prescriptions or can spot the signs of serious illness. But their business models face unrelenting pressures to the point that sometimes they have to close. An AP analysis of data from 49 states and the National Council for Prescription Drug Programs shows that several largely rural states have some of the lowest number of pharmacies per ZIP code. Editor's Note: This trend for closures in rural areas is rampant for hospitals, emergency departments, physicians, and more. Click here for a letter from NHPCO and numerous hospice providers to Congress, Jan. 5, 2024: Protect rural and frontier American's access to hospice and palliative care.

Reply to: Frailty and ethics at the end of life: The importance of a comprehensive assessmentJournal of the American Geriatrics Society; by Colum Thomas MD, Eduardo Bruera MD, William Breitbart MD, Yesne Alici MD, Liz Blackler MBE, LCSW-R, Julia D. Kulikowski MD, Daniel P. Sulmasy MD, PhD; 6/5/24The care of older persons at the end of life often involves competing concerns and highly value-sensitive decisions. In a recent article, we proposed a set of ethical rules—the canons of therapy—to help clinicians navigate complex cases involving older adults with delirium at the end of life. The canons of therapy most pertinent to such cases are restoration, means-end proportionality, discretion, and parsimony (see Table 1 for a description). These canons provide a structured toolset aligned with practical wisdom, which can serve as an ethical heuristic for guiding therapeutic judgments. ...