Literature Review

Nonprofit pledges $4M to expand respite programs for caregiversMcKnight's Home Care; by Adam Healy; 7/26/24The Alzheimer’s Association has pledged more than $4 million in grants that will help community-based organizations enhance respite care programs for caregivers serving people with dementia. “There is an urgent need across the country for dementia-specific respite care programs for people living with dementia and their caregivers,” said Sam Fazio, PhD, the senior director of psychological research and quality care at the nonprofit Alzheimer’s Association, in a statement. “These initial grants will help expand dementia-specific respite care programs and create new ones to support dementia caregivers while ensuring the person living with dementia gets high-quality dementia care in a safe environment.” The grants are part of a five-year program that will direct a total of $25 million to community-based respite service providers.

Veteran in hospice care completes bucket list with tattoos designed by family WNEM/Gray News, Saginaw, MI; by WNEM Digital and Gray News Staff; 7/28/24 A Michigan veteran with ALS crossed off the final item on her bucket list by getting tattoos designed by family members, including her teenage daughter. Beth Bedore, a 47-year-old veteran, served in Iraq and Kuwait before retiring after 23 years. Last year, she was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. She is currently receiving care while on hospice at the Aleda E. Lutz VA Medical Center in Saginaw, WNEM reports. Bedore’s recreational therapist, Heidi Nadobny, says the last wish on the veteran’s bucket list was crossed off Friday. She received two tattoos, one designed by her 14-year-old daughter and the other designed by her daughter’s father. 

Amid trauma and burnout, it ‘takes courage’ to reflect on mental, emotional well-being Healio; by Jennifer Byrne; 7/31/24 ... [William E. Rosa, PhD, MBE, MS] began to realize that in the stressful, devastating situations he and his colleagues faced daily, there was much to be learned from the principles of trauma-informed care. ... “This is the idea that cultivating an awareness can prevent us from re-traumatizing ourselves and others,” he said. “I think it starts with reflecting on — and telling the truth about — our mental and emotional well-being. That takes courage.” In acknowledging the emotional scars, brokenness and vulnerability that comes from tragedy and loss, individuals can begin to heal a lifetime of stored and unresolved trauma, Rosa said. “As a workforce, you and I see unacceptable rates of suicide, burnout, moral distress and attrition,” he said. “It’s time that we come to safe and supported terms with our trauma — not just as individuals, but as a collective, not only for the patients and families we serve, but for us to survive.”Editor's Note: In this article, Dr. Rosa identified "the emotional impact of taking yet another patient off the ventilator at the end of life." Recent articles we've posted in this newsletter about trauma-informed care been in our "Top Reads." While those articles focused on trauma-informed care of the persons you serve, this focuses on the persons who serve, your all-important direct patient care clinicians.

A blood test accurately diagnosed Alzheimer’s 90% of the time, study finds The New York Times; by Pam Belluck; 7/28/24 The New York Times says researchers “reported that a blood test was significantly more accurate than doctors’ interpretation of cognitive tests and CT scans in signaling” Alzheimer’s disease. The study “found that about 90% of the time the blood test correctly identified whether patients with memory problems had Alzheimer’s,” while “dementia specialists using standard methods that did not include expensive PET scans or invasive spinal taps were accurate 73% of the time” and “primary care doctors using those methods got it right only 61% of the time.” The findings were published in JAMA and presented at the Alzheimer’s Association International Conference.

Loss of a loved one early in life may accelerate aging: StudyThe Hill - Health Care; by Miranda Nazzaro; 7/29/24 The experience of losing a loved one early in life could make a person age faster, according to a new study published Monday in the Journal of the American Medical Association. ... Losing a parent or sibling early in life can often be traumatic, causing mental health or cognitive issues, higher risks of heart disease and earlier mortality, researchers noted, adding repeated losses can increase the likelihood of heart disease, dementia or mortality. ... “Future research should focus on finding ways to reduce disproportionate losses among vulnerable groups. For those who experience loss, providing resources for coping and addressing the trauma is essential.”Editor's Note: Click here for the study, "Familial Loss of a Loved One and Biological Again: NIMHD Social Epigenomics Program." Calling all executive leaders who decide staffing and resources for your hospice's bereavement services: examine the long-term mission of your bereavement services for (1) children and teens, (2) young adults, (3) persons with racial and ethnic disparities. 

The bereavement care crisis in hospice facilities MedCity News; by Cara McCarty Abbott; 7/28/24 Bereavement care is an essential part of the hospice experience, designed to support those coping with loss. Bereavement care is not just a compassionate gesture; it is a critical component of the hospice care continuum. So why is it so underserved in the U.S.? ... Instead of pushing harder on hospice providers to find more ways to deliver comprehensive bereavement care with less, it's key to address the systemic forces hampering their ability to deliver quality care at the scale required and address these challenges. Editor's Note: Additionally, does your hospice still rely on the misnamed, overused "5 Stages of Grief"? These were determined from 1960's persons who were dying, not from bereaved persons who live on--surviving--the death. Extensive fresh, contemporary, hospice-designed grief resources to support bereavement counselors and the persons they serve are provided by Composing Life Out of Loss, a sponsor for our newsletter.

AMA Advocacy issue briefsAmerican Medical Association; 7/24/24 Issue briefs summarize key health policy issues by providing concise and easily digestible content targeting both relevant stakeholders and those who may know little about the topic. Contents: Medicare & Medicaid; Telehealth; Scope of practice; Prior authorization; Reducing physician burnout; Practice management; Overdose and mental health/substance use disorder parity; Access to affordable, high-value care; Health care costs & price transparency; Drug costs & pricing; Hospitals & health systems; State medical liability reform; LGBTQ+ health; The business of medicine; Public health improvement; Essential Tools & Resources.

Sasha McAllum Pilkington on grace and storytelling at the end of life Psychotherapy.net; by Lawrence Rubin; 7/22/24 Narrative Clinician, Sasha McAllum Pilkington [of New Zealand],  shares poignant stories she co-created with hospice clients which honor and celebrate their lives. [This interview includes: ...]

Factors affecting palliative care collaboration with pain medicine specialists Hematology Advisor; by James Maitlall, MD; 7/22/24 Structured collaboration between physicians working in palliative care (PC) and pain medicine (PM) may increase PC physician referral of seriously ill patients to PM specialists and potentially optimize their care, according to study results published in the Journal of Pain and Symptom Management. ... The investigators concluded, “Although we found that PC physicians have highly positive attitudes about the value of PM specialists, referral rates remain low, even for IDDS implantation, which has perhaps the largest body of evidence for patients with complex cancer-associated pain.” They added, “Facilitating professional collaboration via joint educational/clinical sessions is one possible solution to drive ongoing interprofessional care in patients with complex pain.

Navigating legal and ethical issues: Nurses’ role in accessing and using the Death Master File Daily Nurse; by Maya Payne; 7/22/24 Nurses have a great deal of responsibility when managing sensitive information, including access to the Death Master File (DMF), because they are healthcare professionals entrusted with patient care. This article explores the moral and legal issues that help nurses use the DMF in their practice in a morally responsible manner. ... Explore this detailed resource on DMF guidelines for further insights into responsibly using the Death Master File in healthcare settings. Editor's Note: About 10 years ago, the Social Security Office declared me as "dead." Yes. This affected everything financial and legal in my life. My husband even received standardized condolences from businesses with his name as my key contact. Clean up? A mess. Cause? The best that the Social Security Office could discern was that someone, somewhere entered a clerical mistake. I will never know. The effects of how this Death Master File is used--legally, ethically, and otherwise--cannot be understated.

I though my love for climbing died with my husband. I was wrong. Climbing; by Olivia Jordan Cornelius; 7/18/24 What do you do with someone’s climbing shoes when they die? I hadn’t thought about it. After all, my husband, Cam, was 34 and still should have had many years of climbing ahead of him. ... On the shoe rack, they sat as a reminder of the future I had imagined we’d have. Too intimate to give away and too painful to keep, I wrapped them in newspaper and put them in the garbage outside. Then I came back to our apartment and hid my pair in the hallway cupboard. ... Our once-adventurous life together ended in a stuffy hospice room. ... [Click on the title's link for this powerful story of navigating young widowhood.]

Palliative pharmacotherapy for cardiovascular disease: A scientific statement from the American Heart Association Circulation: Cardiovascular Quality and Outcomes - American Heart Association (AHA) / American Stroke Association (ASA); by Katherine E. Di Palo, PharmD, MBA, MS, FAHA, Shelli Feder, PhD, APRN, ACHPN, FPCN, FAHA, Yleana T. Baggenstos, PharmD, Cyrille K. Cornelio, PharmD, Daniel E. Forman, MD, Parag Goyal, MD, MSc, Min Ji Kwak, MD, MS, DrPH, and Colleen K. McIlvennan, PhD, DNP, FAHA on behalf of the American Heart Association Clinical Pharmacology Committee of the Council on Clinical Cardiology and Council on Cardiovascular and Stroke Nursing; 7/24 ... Compared with other serious illnesses, medication management that incorporates a palliative approach is underused among individuals with cardiovascular disease. This scientific statement describes palliative pharmacotherapy inclusive of cardiovascular drugs and essential palliative medicines that work synergistically to control symptoms and enhance quality of life. We also summarize and clarify available evidence on the utility of guideline-directed and evidence-based medical therapies in individuals with end-stage heart failure, pulmonary arterial hypertension, coronary heart disease, and other cardiomyopathies while providing clinical considerations for de-escalating or deprescribing. Shared decision-making and goal-oriented care are emphasized and considered quintessential ... across the spectrum of cardiovascular disease.