Literature Review

Aligning pill burden and palliative care needs in late-stage CVD: AHA TCTMD - Cardiovascular Research Foundation; by L.A. McKeown; 7/2/24 The first scientific statement from the American Heart Association (AHA) that focuses specifically on pharmacotherapy considerations in the palliative management of patients with CVD [cardiovascular diesease] urges a patient-centered, compassionate approach to de-escalating and deprescribing. ... In addition to shedding light on how and when to start deprescribing and de-escalating common cardiovascular drugs, the statement discusses palliative drugs for pain, shortness of breath, and appetite in the context of CVD, which [Katherine E.] Di Palo [PharmD (Montefoiore Medical Center, NY)] said the committee identified as a gap in knowledge given that much of the evidence for these drugs comes from patients with serious illnesses like cancer. ... Important Takeaways: Di Palo and colleagues note that palliative care complements cardiovascular care in several important ways, including reducing physical symptom burden, managing emotional and spiritual distress, providing sufficient support for caregivers, and helping patients choose treatment in line with their goals for care. Editor's Note: Click here for the American Heart Association's statement, which we posted on 7/2/24. 

[American Heart Association] Palliative care beneficial to manage symptoms, improve quality of life for people with CVD [cardiovascular disease] American Heart Association; by NewMediaWire; 7/1/24 Implementing patient-centered palliative care therapies, including prescribing, adjusting or discontinuing medications as needed, may help control symptoms and improve quality of life for people with heart disease, according to “Palliative Pharmacotherapy for Cardiovascular Disease,” a new scientific statement from the American Heart Association, published today in the Association’s journal, Circulation: Cardiovascular Quality and Outcomes. The new scientific statement reviews current evidence on the benefits and risks of cardiovascular and essential palliative medications. The statement provides guidance for health care professionals to incorporate palliative methods as part of holistic medication management at all stages of a patient’s health conditions, emphasizing the importance of shared decision-making and goal-oriented care.

Coping and end-of-life decision-making in ALS: A qualitative interview study PLoS One, University of Auckland, New Zealand; by Olga Wenzel, Anke Erdmann, Gerald Neitzke, and Irene Hirschberg; 6/26/24 How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-life care? Which correlating conditions and influences relate to these needs and how do they connect to the wish to die or wish to live? ... We identified the coping strategies ‘avoid thinking about end-of-life’ and its counterpart, ‘planning ahead to be well-prepared,’ and differentiated the latter into the patterns ‘withdrawing from life and taking precautions against life-prolongation’ and ‘searching for a new meaning in life and preparing for life-sustaining treatment’.  ... These strategies may vary over time, resulting in different support needs. Our findings signify that deep insight is needed into PALS‘ coping processes to understand their decision-making about life-sustaining treatment. Healthcare professionals should be sensitive to illness experiences beyond medical aspects and foster coping as a biographical process to better support people with ALS.Editor's Note: Click on the title to access the full text of this insightful, relevant research. Hospice and palliative educators, use this to strengthen your disease-specific resources and training about care for persons with ALS.

Chronic loneliness and the risk of incident stroke in middle and late adulthood: a longitudinal cohort study of U.S. older adults eClinical Medicine, Part of THE LANCET Discovery Science; by Yenee Soh, Ichiro Kawachi, Laura D. Kubzansky, Lisa F. Berkman, and Henning Tiemeier; 6/24/24 Loneliness has been implicated as a stroke risk factor, yet studies have examined loneliness at only one time point. The association of loneliness changes and risk of incident stroke remains understudied. Our aim was to examine the association of loneliness with incident stroke, particularly the role of loneliness chronicity. Chronic loneliness was associated with higher stroke risk independent of depressive symptoms or social isolation. Addressing loneliness may have an important role in stroke prevention, and repeated assessments of loneliness over time may help identify those particularly at risk.Editor's Note: This is the source research for an article we posted yesterday, 6/28/24, titled 

Advanced lung cancer: Studies explore palliative care delivered by telehealth and in a stepped-care approachThe ASCO Post - American Society of Clinical Oncology; by Alice Goodman; 6/25/24 Early palliative care can be integrated into the course of treatment for patients with advanced lung cancer via delivery by telehealth with outcomes similar to when palliative care is delivered via in-person visits, according to results of the REACH PC trial presented by Joseph Greer, PhD, of Harvard Medical School, Boston, at the 2024 ASCO Annual Meeting Plenary Session. A separate randomized noninferiority study presented at the ASCO meeting by Jennifer S. Temel, MD, FASCO, also of Harvard Medical School, Boston, found that stepped palliative care was noninferior to monthly visits with early integrated palliative care. Results of the stepped-care study were published in JAMA to coincide with the presentation at ASCO. [This article includes:]

Alzheimer’s disease and dementia care: 5 Medicare benefits consumers should know Globe Newswire, KELOLAND Media Group; by medicareresources.org; 6/19/24 With the Food and Drug Administration’s approval of new medications like Leqembi, there’s increased focus on ways Medicare can help alleviate the significant costs of Alzheimer’s and dementia care. ... “Alzheimer’s disease and other forms of dementia can come with a heavy financial burden as well as an emotional toll, which is why it’s critical patients and families understand when and how Medicare can help mitigate costs,” said Louise Norris, a health policy analyst for medicareresources.org. “People may be surprised, especially about new coverage of diagnostic tests and medications." ... Here are five critical benefits medicareresources.org says consumers might not know about:

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. 

Man living with ALS for the last 24 years knocks off an item on his bucket list: Skydiving CBS KCTV 5, Waldron, Missouri; by Joe Hennessy; 6/14/24 One of the longest-living people with ALS, 66-year-old Mark Johnson, achieved his dream of skydiving ... His passion for the skies started at a young age with his dad being an airline pilot. ... “I used to fly airplanes when I was a kid, I always wanted to jump out of one,” he said. “Being up there, being able to see everything. All of God’s creation out there.” Johnson is one of the longest survivors of ALS, living with the disease now for almost 25 years, getting assistance from the team at Shirkey Hospice in Richmond, Missouri. He’s traveled to Washington D.C. to raise awareness and pass bills to help those impacted too. ...  How did we get here ...? He was asked by the hospice care workers a while back what is one thing he wants to do and he said skydiving so they managed to find a place that would allow for that dream to come true. 

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.

Why doctors aren’t participating in organ donation after cardiac death Physician's Weekly; by Frank D. Brodkey, MD, FCCM; 6/13/24Organ donation after cardiac death (DCD) differs from the more traditional organ donation after brain death (DBD) insofar that DCD donors are alive and donate organs after discontinuation of life support so that a natural death with cessation of heartbeat and circulation may occur, followed by extraction of organs. This may increase the availability of transplantable organs, leading to improvement in the lives of other humans.  According to the Health Resources and Services Administration, 5896 donations, representing 36% of all donations in 2023, were DCD, representing an increase of 40.7% over the preceding three years. There, however, are significant ethical and scientific issues in the performance of DCD with concepts of end-of-life care, personal autonomy, and concepts of dignity of life and death. ...

How to choose the right hospice care - Brain & Life Magazine Brain & Life; by Hallie Levine; June/July 2024 Hospice care is designed to help patients die with dignity and provide support to their families. These tips can help ensure it does. ... [Case study examples follow.] In hospice, “the focus shifts from treating the disease to managing symptoms and maintaining quality of life,” says James Gordon, MD, FAAN, a neurologist and retired hospice and palliative care expert at the University of Washington in Seattle. “Patients and their families often get to a point where they ask themselves if the cure is causing more suffering than it's worth,” Dr. Gordon says. “If they are close to the end of life, it's often time for hospice.”Editor's Note: We chose this article because its source, Brain & Life Magazine. This can be an excellent disease-specific resource for your serious illness, palliative, hospice, and bereavement team members. "Brain & Life is powered by more than 40,000 neurologists worldwide who are committed to keeping you and your family better informed." Visit its "Disorders A-Z: Neurologic Disorders Resource Center (brainandlife.org)." 

Palliative care significantly improves discussion and documentation of end-of-life care preferences among patients with AML and MDS Oncology Learning Network; transcribed interview featuring Areej El-Jawahri, MD; 6/1/24 Areej El-Jawahri, MD, Massachusetts General Hospital, Boston, Massachusetts, discusses results from a clinical trial comparing a collaborative palliative and oncology care model vs usual care for adult patients with acute myeloid leukemia (AML) and high-risk myelodysplastic syndrome (MDS). The study showed that palliative care significantly improved the rates of discussion and documentation of end-of-life (EOL) care preferences, reduced hospitalization at the EOL, and improved the quality of life in patients. 

Why and how to integrate early palliative care into cutting-edge personalized cancer care American Society of Clinical Oncology Educational Book; Laura A Petrillo, Katie Fitzgerald Jones, Areej El-Jawahri, Justin Sanders, Joseph A Greer, Jennifer S Temel; 6/24 Although ASCO and others recommend early palliative care for all patients with advanced cancer, widespread implementation of early palliative care has not been realized because of barriers such as insufficient reimbursement and a palliative care workforce shortage. Investigators have recently tested several implementation strategies to overcome these barriers, including triggers for palliative care consultations, telehealth delivery, navigator-delivered interventions, and primary palliative care interventions. ... The strengths of early palliative care in supporting patients' and caregivers' coping and centering decisions on their goals and values remain valuable in the care of patients receiving cutting-edge personalized cancer care.